The Sickle Cell Blog

Moving...

2010-05-16T22:05:00.000-07:00

Hello everyone!

This blog was the beginning of a beautiful chapter in my life, and I don't think I have the heart to ever close it down. But as of today, I will no longer be posting on here.

I will be posting to the brand spankin' new Sickle Cell Warriors website! The community and website are still mostly under construction, but I have the bare bones enough to start posting over there. You are going to love it: we have pictures, news feeds, events calendar and eventually I will have a comprehensive SC directory. I am switching from Blogger to Wordpress, and I hope I can take all of you with me!

Please switch your links and RSS feeds. The new website addy is www.sicklecellwarriors.com
http://sicklecellwarriors.com

I hope to see you on there!

Open Letter to Nexim, Diamond Bank and Bank PHB

2010-04-29T23:45:00.000-07:00

Hey everyone,

It's about to get hot in here. I am frustrated with the idleness of the Banks in Nigeria that are affecting Nicosan production. And I'm sick and tired of being frustrated of dealing with some Chairman or VP of Finance's languor. Here is an open letter to the Banks in Nigeria that are holding up the production of Nicosan, and I need you to please copy this, forward it, and disseminate it all over the web. I want this letter to end up on the front page of Nigerian magazines and newspapers, I want this on the web, I need this letter to come to the attention of those powers that be. All I'm asking is that you sign your name to the bottom if you agree or just forward it to someone in your sphere that has the ability to forward it up the chain. Let's make waves people, and get Nicosan back on the market and in the hands of those of us that need it and depend on it. Thank you.

Dear NEXIM, Diamond Bank and Bank PHB,
My name is Tosin Ola, and I am the writer of the Sickle Cell blog located at http://sicklecellblog.blogspot.com. I have been a loyal user of Nicosan ever since it was introduced to me in 2007, and this remedy changed my life.

Before Nicosan, I was in and out of the hospital on a monthly basis, having to have regular blood transfusions, countless IV sticks and daily pain. But once Nicosan started working for me, the daily pain ceased, and I have not been admitted into the hospital since 2008. NIPRD really did deliver an amazing product ~ Nicosan works; it works well; and I know you know it works.

I am very worried, because not only is Nicosan hard to find in the United States, it is very difficult to get in Nigeria as well. I had a reader fly to Nigeria specifically for the purpose of getting a supply of Nicosan for his 2 daughters. He spent 3 weeks, and travelled high and low, from Enugu to Lagos, to Abuja and Onitsha. He searched everywhere he could; going to Xechem and every big pharmacy in Nigeria with no success. He came home without a bottle of Nicosan to show for it. He now has to watch his children go through excruciating pain, and know that he tried to help them, but couldn’t. He cried as he was talking to me on the phone, begging me to procure even a bottle of Nicosan for his children. It broke my heart just telling him that I had none.

My friend in London started taking Nicosan the same time I did. He is a student that is finally able to go to school and have a normal life. Two weeks ago he got admitted into the hospital and has not come back home…because he ran out of Nicosan.

Another friend of mine, Angela, has been on Nicosan for only 9 months. Now she is in and out of the hospital every week, dealing with nurses that could care less about the fact that she is in pain. Last month, 7 patients in Bahrain died from sickle cell in the hospital because no one treated them quickly enough. If they were on Nicosan, they would not have had to go to the hospital. Leah died in December from acute chest syndrome…after being healthy for almost a year while on Nicosan.

These are not just stories. There are people that are suffering, dying and living in excruciating pain that you have the power to help. Nigeria has the highest population of sickle cell patients in the world, and I know that each and every one of you knows someone affected by sickle cell. This is not an isolated condition, and we are all connected. So you are allowing your own child to suffer, your own daughter to be in pain, your own sister or brother to die because of your indolence. It is criminal that you have the power to cause so many people to suffer and that you do it so heartlessly and thoughtlessly, especially since God (and NIPRD) has given you the ability to make this painful nightmare a thing of the past.

Every day I get an email from a sickle cell warrior that I introduced Nicosan to, someone who has been able to FINALLY have a normal life, but now has to deal with this all consuming pain yet again. I get letters from people wanting to start Nicosan, but having no chance, because there is none to be had. My friends are falling sick left and right, and asking me to help…and I have nothing to tell them. What excuse will I give them as they lay in their hospital beds wracked in pain? That because of paper pushers, greed, red tape, politics and miscommunication, we are all suffering? What should I tell them?

Last month, I ran out of Nicosan. Now I am in the same boat as my friends, waiting for the evil crises to descend on me like a specter of doom. I am afraid of falling sick again, I am afraid of having to go to the hospital, because sickle cell patients are dying in hospitals from ‘sickle cell related complications’ at an alarming rate. Not just here in the United States, but in Bahrain, Nigeria, India, Jamaica and Brazil. There is a huge stigma that exists for sickle cell patients around the world, and every time we pass through a hospital, we are playing dice with death. Why would you allow this to be our fate?

And yet, here you sit, on the best kept remedy for sickle cell in 100 years, as dust gathers at the Xechem factory that could be our salvation. The Port of Lagos has equipment to manufacture Nicosan, rusting wastefully away while you sit behind your desk ignoring all attempts to put this matter to rest. Nine months have gone by since the factory closed; nine months that this lifesaving remedy has been off the market. It’s such a tragedy, and I feel like no one cares about the sickle cell sufferers. For if someone did care, with even an ounce of humanity or decency; I would hope that one would move heaven and earth to start production of Nicosan yet again. The solution is not hard to come by, all you need is to pick up the phone, talk to each other, agree to terms, sign a contract, and GET PRODUCTION STARTED! I am not a business major, but even I know that you cannot recoup an investment or make any future profits by allowing the materials, product, and equipment to fall to waste.

Sickle cell patients are getting desperate, and starting to fall for all manner of crooks who claim that they have ‘a Nicosan-similar remedy’. I was proposed a tea made of the same herbs that Nicosan has, and I am considering it, because I feel like this is my only option. Some are going to Hydroyxurea, the cancer drug that has shown some success, even though it has a ton of negative side effects and the potential to trigger cancer.

I would not wish this pain on anyone---not even my worst enemy. This is a burden that is mine to bear, as well as countless million other people. And yet, NIPRD came up with this solution, showed us life in the Promised Land, and then you banks brutally took it away. It frustrates and saddens me that 9 months have gone by and the Xechem factory has not been reopened. There is no excuse in the world that should leave millions of people in agony and suffering like this, put thousands of people at the mercy of uncaring healthcare professionals, and push hundreds of people to the brink of death.

I sincerely urge you, to help us in this dire time. We have no way to make Nicosan ourselves, and you gave us Manna from heaven. So please, I am begging you from the bottom of my heart, do not play with my life. Whatever is stopping the production of Nicosan, please find it in your power to remove it. You are our champions, and we need you to help us. I hope and pray that you will be able to overcome whatever obstacles, people or problems in the way and start producing Nicosan promptly, because frankly: all our lives depend on it.

Sincerely,
Tosin Ola.

Interview with a Medical Doctor with Sickle Cell Disease

2010-04-09T00:46:00.000-07:00

I have decided to do a spotlight series on the careers possible for those with sickle cell. If you would like to be featured, please send me an email at sicklecellwarrior at gmail. You all know that I am a nurse, but I would like to seize this opportunity to introduce you to the one and only, amazing, and inspiring, Dr. MD, who has graciously done this interview.

SCW: Dr. MD, it's a pleasure to meet you. Let's start from the beginning, how old were you when you found out you had sickle cell?
I was 4 yrs old. The doctors initially thought I had appendicitis.

SCW: I guess we all find this out at a young age. Your parents instilled in you that you can do anything you set your heart and mind to. Has this always been true?

Dr. MD: Pretty much. My parents raised me just like my siblings without sickle cell disease. Growing up in Nigeria, I used to be out of school for ~ 6 months out of the year. Yes, I has SSD but no excuses allowed. School was important and I was expected to catch up with my classmates. When I wasn't sick I had to do everything everyone else did: cleaned the house, washed clothes, cooked, fetched water. Sounds easy right, but it actually wasn't. Cleaning the house involved scrubbing the walls and floors, washing clothes was done by hand, no washer and dryer. Cooking involved grinding red hot peppers by hand, using grinding stones, my hands would sting for hours, because I was pretty bad at it. Fetching water, sometimes involved waking up at 'ole dark thirty', as in the crack before the crack of dawn, walking for ~ an hour or more each way, sometimes waiting for ~ two or three hours in long lines. Walking back home with a bucket full of water on my head, all before breakfast. All these things were my parents teaching me discipline.

SCW: Wow, that's really hardcore. My parents pretty much spoiled me rotten ;p. I had to do chores, but it was usually significantly less laborious than what my non-SSD siblings did. Moving along, what made you decide to become a doctor?

Dr. MD: I have always liked science, and was the geeky kid who would rather read the encyclopedia, than socialize. Don't get me wrong, I'm not antisocial! The human body intrigued me, plus I was always fascinated by people who were different; It was always easy for me to make friends with the 'outsiders' 'cos I felt like one.

SCW: What area of medicine do you practice in?
Dr. MD: I am an Obstetrician/Gynecologist

SCW: The life of a medical practitioner can be quite taxing, for our readers, could you describe a typical day?
Dr. MD: My typical work day starts at 8 am. I work 24 hour shifts covering several different areas. Clinic-seeing patients in the office. Labor and delivery- laboring patients, including performing cesarean sections. I also cover Triage (the emergency room), which may include anything from treating pregnant women with colds, to performing emergency surgery on a patient with an ectopic pregnancy (pregnancy in the tube). Consults from inpatients and patient transfers from other hospitals also keep me pretty busy. My job involves being a compassionate, caring physician, being diplomatic, multitasking and fielding problems. It is highly stressful and requires a great deal of concentration. Honestly, I am not always the aforementioned descriptive, especially when achy, or exhausted. Patience, is not my strongest suit, I'm working on it!
I try to stay hydrated when working, eat healthy and take a ten or twenty minute power nap when I can. Sometimes I'm running for 24hrs straight 'cos so much is going on.

SCW: Amazing! You work for 24 hours non-stop? Unreal! Medical school presents a challenge to a sickle cell warrior. I know many of our compatriots have punked out of applying or going to medical school because of this challenge. How were you able to cope with medical school and sickle cell disease?
Dr. MD: Medical school classes started at 7.30am till about 6pm Monday through Friday. I was in the ER several times and had a few hospitalizations. I figured out I wasn't cut out to be a Pediatrician 'cos I would always catch whatever they had. My friends were pretty cool with my SSD, and would help me catch up with school work. The Residents and Attending physicians were also pretty nice and would make sure I was well taken care of.

Residency was different, I was now a real physician working 24-40 hr days. Not all colleagues were sympathetic to working extra hours to cover a sick doc. My friends came through by starting IVs in the call room or in my apartment when it wasn't too busy, or I was off. The nurses and anesthesiologists would give me pain meds sometimes, because I did not have a regular physician. Probably all illegal but hey they got me through.

SCW: It's fortunate that your classmates and colleagues were so supportive. I got the same support during nursing school. I think once you explain to people what you are dealing with, they 'get' it and help you work around sickle cell. Next question, how do you manage SCD and still maintain a thriving career?
Dr. MD: I'll say it's very challenging! Between work, port flushes and doctors appointments I feel like I have 2 full time jobs! When I come home from work in the morning, everything hurts. I usually would take Oxycodone + a muscle relaxant+ a heating pad for my legs and rest during the day if I can. I have a Gastroenterologist and a Hematologist/Oncologist that I see every few months- I keep my appointments, drink plenty of water, try to eat as much unprocessed food as I can, take my medicine, well most of the time, and try to get as much rest as I can. The last one is actually very hard, I'm an insomniac and sleep whenever I can, which is during the day when I'm not working. I work two or three 24 hour shifts a week.

SCW: Holy moly! 3-24 hour shifts! Now I can't complain after a 12-hour shift! You are really committed to your career. Thank you for sharing your regimen; I think we all have some level of insomnia. I wonder, has sickle cell limited any area of your life?
Dr. MD: Not really. I'm tired a lot of times because of my work schedule and taking narcotics, so I don't have a lot of time to socialize. I would like to be in a relationship with someone nice, who understands me and is considerate of my lifestyle. I'm hoping he's out there!

SCW: I know he's out there...we just have to find him! When you reach obstacles in your life, what helps you overcome it?
Dr. MD: Nine years ago I was diagnosed with cancer. Prayer, my friends, and family helped me through. My favorite sayings 'God never gives you more than you can handle' and 'When you are going through hell, keep on going' also give me the extra strength to keep on pushing.

SCW: Amen to that! The first quote is one of my favorite as well! I think it's so apt to our situation. I am just going to throw this next question in here, to prove to the skeptics that you are a sickle cell warrior just like they are. Do you have regular pain (more than 2x/wk)? How do you cope with this when you are working?
Dr. MD: YES. I am in pain EVERYDAY!!! My pain usually runs from a 3 to a 5 on a 10 pain scale. I do not and will not take narcotics when working, it's like driving drunk, so I just deal with it, or take Tramadol close to when I'm about to finish my shift, if it is really bad. Rarely if it is really, super bad; I'll take Toradol and have an IV started.

SCW: I completely understand what you mean. I take Motrin on the job when I'm in pain, and sometimes I am in more pain than my patients! What medications do you take when you are in pain?
Dr. MD: Oxycodone, Toradol, Tramadol

SCW: What is your daily medication regimen?
Dr. MD: Folic acid/2 GI meds for ulcers/Hydroxyurea/Cymbalta/Multivitamins

SCW: I see you are taking Hydroyurea. Personally I am not a fan, but I would like to understand your experience with Hydroxyurea; would you recommend it to someone else? Why or why not?
Dr. MD: In 2001, I developed Non-Hodgkins Lymphoma, 6 months after starting Hydroxyurea (Now, I'm in compete remission). I do not know if the Hydroxyurea precipitated it, however my last hospital admission was in 2007. So I take it, because it works for me.

SCW: Thank you for sharing that. Looking at the 14 year old version of yourself what would you tell her if you could...
Dr. MD: I would tell my 14 year old self: life gets better ;-)

SCW: Hahaha, so true! I would tell my 14 year old self probably the same thing, and to avoid boys XYZ since they are heartbreakers...lol. Is there anything else you would like to tell sickle cell warriors?
Dr. MD: To my fellow sickle cell warriors-stay strong and remember God never gives us more than we can handle!

SCW: Thank you Dr. MD for doing this interview. It was an honor and pleasure to meet you. Wow...isn't she amazing! I told you she was inspiring! This spotlight series is brought to remind you that you can do anything you set your heart and mind to!

Should a Sickle Cell Trait Carrier Marry Someone with Sickle Cell Disease?

2010-04-08T01:48:00.000-07:00

There is a hot topic over at the UKGreat Sickle Cell forum on FB. A gentleman posted this question: My genotype is SS and my fiance is AS. I love this girl very much because of her character. I intend to marry her. Should I go on? I need your candid advice.

I have very strong views about this as a sickle cell warrior. I have seen too many people with sickle cell get relegated to a lonely corner, dumped, and heartbroken just because of their genetic condition. I know many good men and women who are still single yet pining for a spouse even into their 40s and 50s. The fear of sickle cell is a strong thing, and I have to agree that not every person is up to the challenge of living and loving someone with sickle cell.

If you read my archives in the Love and Sex section, you will see that I struggled with my desire to have a soul-mate against my genetics, suffering many failed relationships and heartbreak in the interim. I had earlier ascribed to the notion of not wanting to have kids unless I was 100% certain that they wouldn't get sickle cell. It had been drummed into me as a child, that I had to look for an AA to marry...so that my kids would all be AS. But I realized a few years later, that there is another option. I could marry whoever I felt was the right man for me, and if our genetics didn't match up, then God, science, and modern medicine could help the rest of the way.

Because of this, I cannot advise this gentleman to dump his intended. If he loves her regardless of her having sickle cell...then I feel that he should go through with his plans. The only tricky part about it is the decision to have children. They both should decide if children are the end all be all. Not every couple has children...and yet, they still live wonderful and fulfilling lives.

If they do want children that bad, then they could adopt, have a surrogate egg where she carries the pregnancy, do genetic counseling, or selective in vitro fertilization (which is possible in the US and UK). In addition, with each natural pregnancy, she has a 25% chance of having a child with AS. This does not mean that 1 in 3-4 children will be AS while the others are SS...it means that with each pregnancy, she could have an AS child. I know a woman who had the same odds, had 3 children, and they all are AS.

Besides, the point of marriage is not to be a baby incubator, it is to share your life and love with someone else and have someone at your back who loves you and treats you well. Not everyone that gets married has children...and yet they still have very happy and fulfilling lives. We are living in a modern age, and the world is already overpopulated as it is. So choosing not to have children is not the end of the world.

Not everything in life is guaranteed. Even people with AS or AA can get diagnosed with a condition that has the potential to be more complex than sickle cell. And yet they still get to find love. Diabetes, Cancer, Heart problems, Hepatitis...it's a long list of medical issues that humans now face. Healthy people get viruses that kill within weeks--nothing is guaranteed! Anyone can have anything, so why is sickle cell the one that is the must shunned and feared? Bah!

In addition, if your parents had known about their phenotype, and chosen to break up, abort, or not have you, where would you be today? I consider my life as a blessing, and as the only sickle cell warrior in my family, I love my parents for having me. I love my life, and do not consider it a burden.

So many sickle cell patients end up alone and lonely, without someone to share their life with because we in the community are even stigmatizing ourselves out of fear. We live our lives in fear of passing sickle cell to our offspring. Instead of wallowing in myths and fear, do your research! You can love someone with sickle cell, and to relegate this woman to a life without her love just because of her genetic condition----THAT is NONSENSE!

Sickle Cell Patients Go to the Hospital Repeatedly

2010-04-06T10:39:00.000-07:00

Although this article is about a decade overdue, I am glad that there is now documented empirical knowledge that sickle cell patients are in pain almost every single day!

In eight states studied, researchers found that one-third of sickle cell patients who visited the hospital returned within 30 days in search of pain relief. Young people, between the ages of 18 and 30, were especially likely to seek care.

"I think it's not so much a failure of the hospital itself, but a failure of us being able to prevent these complications and being able to treat them," said Dr. George R. Buchanan, a pediatrics professor at University of Texas Southwestern Medical Center, who is familiar with the study findings.

Personally, and I'm sure most sickle cell warriors can attest to this, I return to the hospital because I AM STILL IN PAIN! If I wasn't hurting, I would never want to step foot in the ER. So it is a failure on the part of the health-care providers because they are so quick to discharge SC patients from the ER after the requisite 3 doses without proper medication to take at home. All they say is "Visit your Primary care doctor" but I can't go to the PCP because I am in pain. So I end up at home, getting sicker and sicker until eventually someone calls the ambulance or drags me back in the hospital. Even when admitted, doctors tend to discharge us before the pain is even resolved on a moderate level.

Anyway, it is a step in the right direction. This article was published in the mainstream U.S. News &World Report. Hopefully doctors will learn from this.

Check out the full article HERE.

How to Join Sickle Cell Trials & Studies

2010-03-31T02:42:00.000-07:00

Have you ever wanted to enroll or participate in a research study or program involving sickle cell and didn't know where to start?

Well Veronica (of Break Sickle Silence) shared with us on the Sickle Cell Warrior Facebook page a valuable website that I just had to share with all of you.

Go to http://clinicaltrials.gov and do a search for "Sickle Cell" and your location. This will bring up all the government sponsored SCD trials close to you. You can narrow the results by those Actively Recruiting, choose the one that you are interested in, and then more info of the study, and contact info will open.

It might take some searching to find the best program for you...but if each of us participated in just one study in our lifetime, then we are actively helping find a cure to sickle cell! Be a part of the solution darlings!

I did a preliminary search, all you have to do to get started is click right here.

Sickle Cell Award

2010-03-28T05:37:00.000-07:00

Dear Sickle Cell Warrior,

You have been identified as a leader in the Sickle Cell Anemia community. By sharing your personal, first-hand experiences with this disorder on your blog (Sickle Cell Can Kiss My A**!!!), you have helped others. AccessDNA's mission is to help increase the awareness of both rare and common genetic disorders by creating accessible and reliable information on genetic conditions. We respect your efforts and are privileged to distinguish your blog with the following award:

Thanks again, and we look forward to working together to improve disease treatment and management options!

Jordanna Joaquina, MS, CGC
Director of Genetics and Co-Founder
www.AccessDNA.com

Awwwww....thanks! I'm just doing my part in raising sickle cell awareness. I appreciate the honor.

'Mini' Transplant May Reverse Severe Sickle Cell Disease

2010-03-27T06:16:00.000-07:00

Results of a preliminary study by scientists at the National Institutes of Health and Johns Hopkins show that "mini" stem cell transplantation may safely reverse severe sickle cell disease in adults.

The phase I/II study to establish safety of the procedure, published December 10 in the New England Journal of Medicine, describes 10 patients with severe sickle cell disease who received intravenous transplants of blood-forming stem cells. The transplanted stem cells came from the peripheral blood of healthy related donors matched to the patients' tissue types.

Using this procedure, nine of 10 patients treated have normal red blood cells and reversal of organ damage caused by the disease.

This is a new type of transplant, a little different from the other one. In this study, the patient's bone marrow is not completely annihilated, but smaller portions of it are killed off, to make room for the newly transplanted cells. The sickled cells co-exist with newly implanted 'normal' cells, but the normal cells are in a higher concentration, thereby limiting sickle cell pain and complications.

The study is still in early research phases, but here is another bold step towards finding a solution to sickle cell disease.

Read the Full Article HERE.
Source: Johns Hopkins Medical Institutions (2009, December 10). 'Mini' transplant may reverse severe sickle cell disease. ScienceDaily.

Sickle Cell Patient Dies in Bahrain:(

2010-03-18T01:05:00.000-07:00

To all my sickle cell warriors in other countries, my heart goes out to you. I know that we mostly talk about the care in the US, and I know that at times, the care in other places can be even more difficult than what we have over here. Wherever you are, whatever your struggle, know that you are not alone.

SIXTH sickle cell patient in just over two months has died at Salmaniya Medical Complex (BAHRAIN ), it emerged yesterday. The latest victim is 19-year-old Saudi Ahmed Yousif Al Jassim, who lived in Ma'ameer. He arrived at the Accident and Emergency Department at around 10am on Saturday, complaining of severe body pain, according to campaigners.

There were no beds available in the department, so he was admitted to Ward 44, said Bahrain Society for Sickle Cell Anaemia Patient Care chairman Zakareya Ebrahim Alkadhem.

"Doctors at the department said he needed to be admitted to Intensive Care Unit (ICU), but there was no bed available, so they shifted him to the ward," said Mr Alkadhem.

"There was at that time no bed in the Resuscitation Room as well as the ICU."
Mr Alkadhem claimed that Mr Al Jassim's condition deteriorated rapidly and cardio-pulmonary resuscitation (CPR) was called for around 3pm and then again at 5pm.
"However, Mr Al Jassim passed away at around 5.30pm, when he failed to come out of the second CPR," he said.

Read the full story HERE. This is so sad. It could have been prevented. We lost another one.

Sickle Cell Rules

2010-03-17T04:41:00.000-07:00

On the SCW Facebook page, there is a mention of the rules of sickle cell, and that once you know the rules, you have a leg up in managing your condition and living a wonderfully vibrant life.

The rules are not steadfast, and of course depend on the individual; but it's something that most sickle cell warriors have had to learn, some the hard way. I must confess, that even though my mom drilled most of the rules into me when I was younger, I ended up ignoring; or disobeying them, much to my detriment as I spent days later in a painful crises.

Without further ado, here is my list of Sickle Cell Rules.

Drink water. Water to a sickle cell warrior is the essence of life, health and vitality. Water helps to cleanse your body, flush out dead cells, increases the volume of your blood, thereby reducing the 'clumping' properties of the sickle cells. One cannot have too much water when it comes to sickle cell. I drink 2 liters minimum every day.

Eat healthy foods. Food is the energy source of your body, and you want to make sure your body is performing at it's best capability. Fresh fruits and vegetables are essential, and stay away from fatty foods. My weakness is Curly Fries...not good for me on so many levels, but I find it hard to say no:) Processed foods are high in sodium, and sodium depletes your body's hydration (since it pulls water from the cellular level into the intracellular level, where it is not useful). So cutting down on one's sodium intake is recommended. The fresher the food, the more nutritious...the better for you. Try foods rich in folate like Kale and spinach, as well as thiocynate like beets and carrots. Meats should be lean, but a vegetarian diet is preferred (I learned this the hard way). Eating fatty foods and meat narrows the vasculature of your arteries and veins, thereby making it narrower for the cells to get through, and more prone for a clumping painful traffic jam.

Stay warm. Always have a sweater, jacket or coat with you; especially if you are in a place with unpredictable weather (like Portland). Cold temps leads to vaso-constriction which leads to a crises. The worst crises for me always come when I've been exposed to a cold environment for even something as small as 5 minutes. Hot temps lead to dehydration which can also trigger a crises.

Avoid stress. When you are stressed, your body jacks up on hormones which can lead to a mini crises. Also, you don't take care of yourself when you are stressed, and this can compromise your immune system etc.

Avoid infections. Infections can be the harbinger of worse things. A simple cold can turn to an upper respiratory infection or acute chest syndrome...all complications that sickle cell warriors want to avoid at all costs. So if you see someone coughing, or sneezing please practice good hygiene and avoid sucking face with said person. I once caught the flu from my fiance that led me to the hospital for 2 weeks. He was fine 3 days after he had it.

Travel smart. Flying, diving, road trips etc. all must be done with a degree of caution and understanding of your body. Drink, stretch, pre-medicate and you should get there safely and without pain.

Rest! Sometimes, I ward off a crises just by drinking, taking some meds, and going to sleep. A solid rest will rejuvenate your body, give you strength, and even ease the pain away while asleep. I don't know the etiology of this, but for mini-crises, nothing works for me better than sleep.

Listen to your body. Sleep when it tells you to sleep. Remember, pain does not always have to be a portent of doom, but just a friendly reminder from your body that you are pushing it too hard and need to slow it down. You know your body best, so treat her/him well.

Go to the doctor. I know that many of us (myself included), abhor doctor's visits. But this is a necessary evil, to update your immunizations and vaccinations, get your lab work drawn and stock up on your meds. Also, the doctor has your medical history, and a good doc knows how to pre-screen you for complications before they arise.

That's all I can think of right now. What are your Sickle Cell rules?

SC Treatment Clinic Opens in Chicago

2010-03-15T04:47:00.000-07:00

I love hearing about every new sickle cell clinic that opens. It means that the sickle cell warriors in these locations no longer have to go through the stress of the ER, but can be treated more quickly with care and compassion.

Now both patients of the Sickle Cell Center at the University of Illinois at Chicago have an alternative to the ER: the university's new Sickle Cell Acute Care Treatment Center, 1740 W. Taylor St. The major advantage for patients is that they can get immediate and aggressive treatment because doctors and nurses already are familiar with them.

Read the rest of the article HERE.

O'Grady started it, and now so many others have followed. Hopefully, one day there will be a sickle cell clinic close to you.

Sickle Cell and Ports, Catheters & IVs

2010-03-02T01:38:00.000-08:00

Video blog posting about IVs, ports, and central access catheters

Do Not Call me a Sickler!!!

2010-02-28T15:10:00.000-08:00

My first video blog.

Sickle Cell & Your Period

2010-02-27T13:51:00.000-08:00

I was wondering if anyone else has pain right before their period starts or during. I never was a woman to get cramps or migraines but i do get pains in my left knee right before my period starts. Lately I've been also feeling drowsy and drained.

I have said on here several times that ones menstrual cycle can trigger a crises. What I also forgot to mention was everything that goes into that combination.

You all know that sickle cell warriors are naturally anemic. This means that we already have a low blood count, less oxygen carrying ability to our cells and are at risk for fatigue, exhaustion and tiredness.

Now, when you throw in a period, your are losing blood on top of your low hemoglobin count. If you were to check your Heme counts then, it would be lower than your normal 'healthy' ranges. So being tired, sleepy and exhausted are natural states that can be exacerbated by one's menstruation cycle.

Some warriors have pain in their lower back (like me), or other joints before, during or after their period. Remember that during your period, there are alot of hormones floating around doing Mother Nature's bidding: Gonadotropin-releasing hormone (GnRH), Follicle-stimulating hormone (FSH), Luteinizing hormone (LH), Estrogen, Progesterone and of course, Testosterone.

Research has supported that these hormones contribute to ligament and muscle laxity, swelling in the joints, and collection of fluid throughout the body. All of these have the potential to cause additional pain, that one might attribute to sickle cell pain, but is actually period pain.

Of course, having a low heme count can trigger pain or a mini-crises, since your cells are not getting enough oxygen. Remember, pain is the natural body's response to stressors, a warning signal telling you that something is wrong.

During my period, things that help most are a heating pad (heat is very good!), taking naps, Motrin every 6-8 hours and sometimes when it's really bad, a glass of wine. Wine relaxes the muscles in the body (including the cramping uterus), and makes me relaxed enough to fall asleep.

There was a time that I used to dread my periods, because I could almost attribute them to triggering a crises. However, over the years, I have learned to stay hydrated, take Folic acid during that whole week and avoid other triggers of a crises.

As with everything else, one's menstrual cycle is another facet that we must balance as sickle cell warriors.

Sickle Cell and Insomnia

2010-02-26T01:18:00.000-08:00

Many sickle cell warriors have insomnia. I haven't been able to figure out the biophysical reasons around this, but I'm actively searching. The only hypothesis I have is that insomnia is somehow due to the pain meds we take. Perhaps our bodies become attuned to drowsiness only with opiates and as a result we can't fall asleep without sleep aids.

I'm truly nocturnal (as you can see my blog postings are usually between 1 and 4 am). I have been a night owl as far back as I can remember. Going to bed early for me is hitting the sack at 2am. I think better at night, and I honestly believe that there is truly nothing more soothing than having a nice, quiet house all to yourself:)

However, I know that those of you that work regular jobs find it difficult to be alert and functioning after staying up til 4am in the morning. I know that many toss and turn for hours, while others have to take Ambien, Benadryl or some other sleep aid.

The most effective thing that works to put me to sleep after all my other routines have failed is a dose of Melatonin. Melatonin is a natural sleep hormone, produced by the body when you are lying at rest in a darkened room. Melatonin helps to shorten the time it takes to fall asleep, promote sleepiness and lengthen the time you are asleep.

The first time I took it, I had 3mg, which was way too much for me!! It had me feeling sleepy even when I was awake at work..ugh! I gradually modified my dose, and now I take 1mg about 30 minutes before I want to sleep. I do not use this every night, just on those nights when I'm having trouble falling asleep, or have to force myself to sleep because I have an early meeting in the AM.

Melatonin can be gotten from your natural supplement store, local pharmacist or grocery store. Be careful with the dose you select: it comes in 1mg, 3mg and 5mg. The body naturally secretes between 0.1-0.5mg, so some experts have argued that the pharmaceutical dosing is too much. But you also have to take into account that not all of the Melatonin will be absorbed in your body (since stomach acids tend to neutralize a large % of ingested medications).

In addition, research has shown the the amount of Melatonin secreted by the body decreases gradually as we age. This is why older people sometimes sleep less than others.

If you are prone to depression, Melatonin is not recommended for you. Also, because we do have sickle cell, one should be careful since some research suggests that Melatonin leads to blood clots.

On the plus side, Melatonin helps to establish a normal sleep/wake cycle, sync your body's biorhythms and circadian rhythm, is an antioxidant, and helps with drug withdrawal.

So if you have tried everything else to help your insomnia and nothing has worked, or if you do not want to tack on another hardcore drug into your already medicated regimen, I would suggest giving Melatonin a try.

If anyone can explain why Sickle Cell warriors are insomniacs, please leave a comment/send me a message. I would love to understand this. Thank you.

Sickle Cell News

2010-02-25T11:47:00.000-08:00

Medical researchers are developing a new surveillance system to determine the number of patients diagnosed with a family of inherited blood disorders known as hemoglobinopathies, including sickle cell disease, thalassemias, and hemoglobin E disease.

The National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health is funding the four-year pilot project, which will involve the Centers for Disease Control and Prevention and six state health departments, to create ways to learn more about the extent of hemoglobinopathies in the United States.

Data collected from the $27 million Registry and Surveillance System in Hemoglobinopathies (RuSH) project will help researchers determine the most effective plans for developing future hemoglobinopathy registries. Research findings based on data from disease registries may provide new ideas for drug therapies and can spur the development of tests that can determine severity of diseases over the lifespan.

Read the rest of the press release HERE

Traveling Abroad with Sickle Cell

2010-02-23T18:27:00.000-08:00

Question: I am a sickle cell warrior and I'm afraid to travel to certain countries like Ukraine or China. Help!

Okay, so I know that one of the main tenets of this blog is that sickle cell should not limit you. And I say that if you wish to travel to other countries, go for it. Just be sickle smart, plan and prepare for every eventuality.

Do everything in your power not to fall sick. Pace yourself, listen to your body, hydrate, be transfused before you leave your home base, avoid stress, get rest...you know, the usual sickle cell regimen. That way, should you get sick, hopefully it won't be a full blown crises but just a mini one that you can deal with in your hotel room.

If you can afford it, get traveler's medical insurance. This will cover most emergency room visits and treatments post ER visits while you are abroad. Some countries require this as a contingency plan before you get a long-term visa (greater than 90 day stay). Just make sure before you buy in, that you read and understand the Pre-Existing Conditions clause. If you have Kaiser insurance, you are extremely lucky. They will cover the full bill of your medical care abroad, and might even fly you back to the US for treatment if you need to be hospitalized.

When traveling abroad, make sure you have some of your medical history with you. You should have a printout of your current labs, your last discharge summary, and a list of medications that you are on. I usually visit my doctor a few weeks before my trip for a routine checkup and ask for a letter that I can give physicians in other countries that details my most common sickle cell complications, medications and treatment plans. I also ask for a prescription for my pain meds that will cover me for the full period when I am abroad. I never want to run out of meds in a foreign country, because it will be hard to get the same meds and doses abroad. Keep all this stuff in a safe place, probably close to where you have your passport.

If you are visiting non-English speaking countries, make sure you understand the language. If not, I suggest to stay away from the rural areas and visit the big cities where there are alot of tourists and more English speakers. Chances are there, you will be able to find an English speaking hospital/physician that can attend to your needs. Some cities have hospitals that are exclusively English speaking, a good internet search or phone call to the embassy can help you in your research.

Know something about blood transfusions. If the country you are going to has a low population of Africans/African Americans, it might be hard to come up with the right antibody/antigen match for your blood. Sure, they can match your phenotype real easy, but each cultural group has antigen markers that are not present in others and put you at risk for having a transfusion reaction. This was one of the reasons that the embassy of Australia did not want to give me a work visa, because they were concerned that there wouldn't be a blood match if I did need a transfusion. This is why I highly recommend a pre-transfusion before you travel abroad.

Not all countries have a significant sickle cell population i.e. Scandinavian countries and some parts of Asia. You might find a couple of sickle cell warriors, but not a huge community. As a result, most hospitals and doctors will not have current exposure with treatment of a sickle cell warrior in full blown crises. (This can actually be a good thing). However, all physicians learn about sickle cell in school, it is a hematologic condition and is studied in all medical schools. The only thing is that not having current exposure puts the doctor at a disadvantage as to what to test for, and what to prescribe for your treatment. But not having exposure also means that the doctors are not prone to misjudge, discriminate, or stigmatize against sickle cell patients. The medical professionals are more compassionate, are more prone to listen to you and try to help you.

Ask for a hematologist or oncologist. They generally have more experience with blood disorders and may have come across sickle cell. If all else fails, I guess you have to settle for an internal med doctor, but don't worry...they aren't like the internal med docs here...they actually do not act like they know everything, will research your condition with peers and professional journals, and will read the documents you give them from your physician.

Know that medications are different when abroad. They have different drug manufacturers, different drug concentrations and different meds, just the same way they have a different currencies. So the docs might be giving you a different drug that hopefully will have the same effect. If you have any allergies, research the alternate names and tell the docs so they know prior to your treatment. For example, Tylenol is called Paracetamol...(sorry, this is the only one I know offhand).

Beyond this, just follow the basic traveler rules. Only drink bottled water, get your immunization shots, stay safe and have fun!

Sex with Sickle Cell

2010-02-21T01:06:00.000-08:00

How can one have sex without fear of falling ill in between or after?

That's a great question. I don't think that you can really get rid of the fear until you have had successful sessions in the boudoir without a crises. It does take a while to find the best routine and regimen that works for you, and it all depends on your partner, and how you articulate your needs and limitations.

The truth of the matter is that you have to listen to what your body is telling you. Chances are, positions that have your knees and joints in odd angles are okay for a few minutes, but anything more than 4-5, and you will be hurting seriously after. You have to find knee friendly positions as your staples, like missionary for the ladies with sickle cell, and doggy style for the guys. You can switch it up and do other positions, but you shouldn't be trying to work through the Kama Sutra or folding your body up like a pretzel in the name of good sex.

Make sure you are well hydrated before and after engaging in any serious bedplay. Heck, if you take a break between acts, drink some water then too! You are losing water through perspiration and bodily fluids, so replenishing them as soon as possible is essential to preventing a crises.

You know those twinges you get in certain parts of your body when you are engaging in strenuous activity? Do not ignore those twinges during sex. That is your body's early warning signal telling you that whatever position you are in, or whatever you are doing is way too much for you! Switch it up, take a break, put your legs down and stretch out your limbs.

Ease into it. Sex is exercise, and when you are going to the gym, you always do stretches before you hit the treadmill. Stretching improves the blood flow to your muscles, prevents spasms, cramps, and heats up the body gradually thereby preventing lactic acid buildup in the muscles. Since during the plateau phase of sex (right before orgasm), your muscles automatically tense up, it's good to have them warm and supple when this occurs.

Oh, and chances are, with sickle cell, you aren't going to be a Sex Olympian. There will be no 2-3 hour bedroom sessions for you...in fact, you will be lucky if you make it to the 45 minute mark (this includes foreplay), without getting tired and fatigued. Remember, we are naturally anemic, which means that we are biologically at a slight disadvantage to those with normal hemoglobin count.

To overcome this limitation, I would suggest expanding your repertoire to include other things besides coitus. Think feathers, tantra, erotic massages, erotica, light touches, oral, BJs etc. If you get him (or her) riled up enough before penetration, chances are, your significant other won't even notice that it's been less than an hour for the whole event.

The hardest part for me was finding a partner that was patient, intelligent and loving enough to have sex with me without inducing a crises. It takes a special person to be able to understand the implications of SCD, and have multiple successful encounters in the bedroom without triggering a crises. Once you are able to do that, then you will have the comfort level to explore the outer realms of your desire, and still contain that SCD beast within.

Good luck!

Sickle Cell Advocacy & Activism

2010-02-19T00:30:00.000-08:00

This week, I got a chance to speak with Phyllis Thomas, the founder of the SCD Soldiers Network which is an Advocacy Group for Adults with Sickle Cell Disease (AGASCA). The SCD Soldier Network enables the sickle cell community to be advocates for each other. The beautiful part of this organization is that it's driven completely by volunteers like you and I.

To reduce the ignorance and stigma that people with sickle cell face, each of us have to be the voice, and the face of sickle cell to our peers, colleagues, friends, family and community. The SC Soldier Network will give you the tools to educate those around you.

Support Soldiers disseminate information in their communities, make referrals to the organization of patients that need AGASCA services, and attend AGASCA events in their area.

Front Line soldiers are charged with teaching, advocating, intervening and lobbying for change in the lives of the SCD patients they come across.

"They do the hands-on advocacy work. They also support those in need of care when in the hospital. They visit patients, provide meals for the families who are headed by a client who is sick. There are a variety of services that they will provide."

I just registered to be a Front Line Soldier for my community and I need you to register as well. Ghandi said, "Be the change you want to see in the world." We want the public to treat us differently, we want more information about sickle cell available to the masses, we want advocacy and support when we are sick. So instead of waiting for someone to do this for us...let us join together and do it ourselves. Join AGASCA today.

Sold out

2010-02-18T00:26:00.000-08:00

Sorry, this item is presently out of stock. Sorry for the inconvenience.

I'm Nigerian!!!

2010-02-17T00:41:00.000-08:00

For some reason, there seems to be a lingering question of my origins. Why? What does it matter? I have no idea what the big mystery is. Anyway, to clarify matters, reduce endless speculation, and clear the air; allow me to re-introduce myself.

My name is Tosin Ola. I was born in Nigeria, raised in Nigeria, bred and buttered (as they say), in Nigeria. I came to the United States when I was 4, returned home to Naija when I was 10, and came back to the US when I turned 18. I'm assimilated into the US archetype, but am 100% Nigerian.

I actually have 13 names listed on my birth certificate; and yes, Jennifer is one of them.

Vixen is a nickname, coined from my first blog, which did not talk about sickle cell at all but delved more into the mysteries of dating and relationships. Since I used the same blogger profile when I set up this blog, the pseudonym carried over into this blog.

Sickle Cell Warrior, or SCW, is actually the pseudonym for this blog. I refuse to accept the label of sickler, sufferer or any other name that incites pitying looks and shunned whispers. I do not think that sickle cell is something to be ashamed of, and people with diabetes are not called diabeters...so why should I be called a sickler?

Anyway...now that that is all cleared up, let's get on to more important matters:)

Decisions...

2010-02-13T04:33:00.000-08:00

So I know that I haven't blogged in a couple of weeks, but readers on the FB page will know that I ran out of Nicosan and fell sick! I'm much better now, and things seem to be looking up on the Nicosan front.

I have also been job hunting. Actually I applied for and got 2 jobs and now I'm faced with the dilemma of having to turn one down. I'm actually tempted to keep them both, but I know that my sickle cell won't let me work that much! I usually work 3 or 4 days in a row, and need a few days in between to feel rejuvenated enough to work again. But I like both jobs, and see the potential for growth in both organizations. Decisions, decisions, decisions!

I guess I shouldn't be venting about this, after all, some people would be grateful to have one job offer, let alone 2. But even though I know rationally which job to accept...the other job beckons me as well.

Job 1: is where I presently work but the job will be as a permanent employee instead of a contracted position. I know the routine, adore my coworkers, and it's a cush (easy) job. I've done this type of nursing for a while now, and I'm used to it. The schedule is good and the pay and benefits are astoundingly good. Free parking. The hours are 12pm-11pm...which is perfect because I get to sleep in, and still get to fall asleep in my own bed at night.

Job 2: is more intense. It will be a new field,~Trauma, so I will be coming in not only as a new employee, but completely new to that type of nursing. It will be challenging, difficult and will have a huge learning curve. However, it aligns perfectly with my future goals, and sets me up in a good position for my graduate program (the hospital is directly affiliated with my future grad school). The pay is a couple of dollars less per hour, and the benefits totally suck. Parking is atrocious there. It is a night shift position (7pm to 730am), so I will be doing the graveyard thing again.

I really like Job 1, because I'm used to it, it's safe, and it pays more now. Job 2 however, aligns with my future goals, and once I'm done with grad school, I will be making more than both these jobs combined.

It's times like this that I wish i was a normal person, who could hold down 2 full time jobs and not have a crises. So I have to pick one...this week. The question is,...which one?

Letters Needed for Nicosan

2010-01-25T01:40:00.000-08:00

Hello everyone,

As I'm writing this, I'm having my first pain crises in over a year. I ran out of Nicosan last week, and I got slammed with pain today. So. Not. Fun. I'd almost forgotten how all encompassing a sickle cell crises is. I was relishing my new lease on life only to get slammed back into the depths of agony and pain. Like I said, "So.Not.Fun."

For those of you in the know, the Nicosan factory in Nigeria has stopped production for the last 6 months due to financial issues. Here is a letter from the director of TEAM Sickle Cell and one of the activists helping to get Nicosan back on the market.

As I've told most of you, I'm involved in a project in Nigeria that relates to a very effective treatment for Sickle Cell called Nicosan. I've purposely tried to keep that project separate from TEaM Sickle Cell because I don't want it to seem that the only reason this was established was to help with Nicosan. Right now though, I need your help. We have a medicine that has helped thousands of people reduce the frequency and severity of Sickle Cell crises and right now the facility that produces that medicine is locked up because the banks in Nigeria can't figure out what to do. Regardless of whether or not you or anyone you know is interested in using Nicosan, the fact is that a potential treatment that doesn't have the side effects of the other commonly used medicine isn't available right now because of a bunch of nonsense. Those of you that know me know that I spent six months in Nigeria in 2009 working on getting the problems with Nicosan and the company that made Nicosan resolved, but have been unsuccessful to date. The issue is that once you start using it, if you stop it's like you never took it and the potential of Sickle Cell complications return. On nearly a daily basis I'm answering questions from people around the world as to how to get it, including from many in Nigeria that were on it, but can no longer find it. So, what's the point? I want to make some noise at this point. I want to send emails to the people involved and get them to understand that having the facility doors closed for six months is totally unacceptable. There are many solutions that have been offered and none of them have been accepted and now we have people trying to find alternative medicines. If you're not aware of what Nicosan is, I've set up a Fan page and have posted a series of clinical data documents and other technical documents that you might be interested in. The link to that page is:

http://www.facebook.com/pages/Nicosan-Treatment-for-Sickle-Cell/175936562561?ref=mf

If you're willing to send a couple of emails for us, please write to me at lamontef@teamsicklecell.com and I'll let you know what we are looking to do. Thank you.

As soon as I can coherently think and function and this pain crises is over, I will be drafting my letter of appeal to the banks. It's going to be nothing fancy, just a statement of how much Nicosan has helped me, and how much we need the factory operational asap. I hope that all the other Nicosan users out there will join us in this fight.

WEGO Interview

2010-01-15T18:13:00.000-08:00

Part Two of the WEGO interview is up!

Sickle Cell Advocates & Activism

2010-01-13T13:39:00.000-08:00

Hello fabulous warriors!

Okay, everyone here has gotten something from the sickle cell online community in one way or another. Now here is your chance to participate and help others with knowledge the same way you have been helped. Remember, we are the only ones that can change the way the world views sickle cell warriors, and we do this by starting in our circle of influence. Here are a few organizations, surveys and communities that need your input to grow and effectively serve us.

Phyllis Bazen, a Nurse Practitioner from the University of Rochester is seeking those with sickle cell to participate in a research study that focuses on factors of stress that sickle cell patients have. I have already participated in this study...and she just needs 103 candidates, so please, no matter where you are in the US, check out the website; email, call or contact Phyllis to join the study. It doesn't take long, just 1 hour, and you have the satisfaction of knowing that you helped to improve the sickle cell body of knowledge (also, for completing it, you get $20). Check it out at http://www.scdstresstudy.com/

The SCD Soldier Network is currently recruiting people who would like to help promote advocacy programs for adults with Sickle Cell Disease. Fill out the information card on the "Recruiting Station" page and you will be contacted in order to determine where you fit. Our primary function is to provide assistance whenever a person with SCD feels as though they need help with an issue that has arisen as a result of the disease.

Employer Conflict Resolution
In-Patient Conflict Resolution
Consultation
Education
Outreach

You do not have to have the disorder in order to join....Visit http://scdsoldiernetwork.com for more info!

WEGO Health is creating a sickle cell network for sickle cell advocates and warriors to connect, so please head over there and join, start your profile and help grow the community. In addition, for those sickle cell activists (YES, THAT DOES MEAN YOU!), that are interested in joining a focus group related to studying the current trends in sickle cell research, please fill out this survey.

To be featured in next weeks' edition of Advocacy & Activism, please send me information about your cause, research project, survey or community. Remember, we all must do our part to bring awareness to the populance and end the sickle cell stigma!

WEGO Health Interview

2010-01-13T02:14:00.000-08:00

I just received notice that an interview I did with Marie C. of WEGO Health is so officially posted in the blogosphere. As you know, I'm quite verbose, and once I start talking about sickle cell, I pretty much don't stop..lol, so the second part of the interview will be posted tomorrow.

The interview goes into the reasons for starting this blog and why I'm so passionate about sickle cell. And a bonus, there is a picture (for those of you that have been clamoring for a face to put to the name!)

Check it out HERE.

Staying Warm in Cold Weather with Sickle Cell

2010-01-12T00:58:00.000-08:00

Here's a tip to keep warm this winter. Try light fabrics that are layered multiple times. Silk long johns/undershirts are good for keeping body heat close in your body. 100% cashmere is expensive, but lightweight and warm enough to layer with another sweater on top for those extra chilly climes. I usually wear my silk tight pants and under shirt, a regular shirt on top, a cashmere sweater and another bigger, bulky sweater to keep toasty up top.

Cover your head, since 75% of body heat is lost through the head.

Tuck your silk long johns into your socks. Wear leg warmers if you are going to be standing outside for a long time on top or under your jeans.

Wrap a winter scarf around your neck and snuggle into your big winter coat. Try coats that are lined, or filled with some goose down, wind resistant, as well as long enough to cover most of your body.

Does anyone else have tips?

Hopefully this will protect you from the harshest of the elements. Stay warm everyone!

Today's Post

2010-01-11T02:32:00.000-08:00

Hello everyone,

This year, I want to start a spotlight series for people with sickle cell all over the world. It will be a weekly thing, and I will just send an email with questions for you to answer. I know from the feed reader that we have readers from Zambia, Nigeria, India, UK, China, Sudan, Saudi Arabia, Brazil, Fiji etc....so this trip across the globe will help other sickle cell warriors see how living with SCD works in your neck of the woods. If you would like to share you story, please send me an email!

If you haven't joined the SCW Facebook page yet, come join us! The warriors on here are so awesome, and there are so many other resources for us to share.

To all those that have contacted me about Nicosan, or checked out the usual spot for the Paypal link...I took it off because presently, I'm completely out of stock. I'm trying to get my hands on a few more boxes, but Nicosan is super scarce in Nigeria ever since the company stopped production last year.

Several people are working hard and long hours to get the company up and running again. We just need your prayers and well wishes that whatever the impediment blocking the resurgence of Nicosan, that it will be removed!

I'm super nervous because I've experienced life without major pains for almost 1.5 years. I think that I will be an emotional wreck in a couple of weeks...I can already feel the minor pains twinging. Those wicked sickle cells are probably rejoicing since they get to wreck havoc on my body yet again. I guess this is the story of our lives...

As soon as I get my hands on a box, or 2 or 10...I will of course let the group know.

I hope everyone is doing well, and handling the winter as best as you can. Many sickle cell warriors took ill over the holidays (due to the stress, change in weather, colds, flu etc.) To all those that are ill, I wish you speedy recovery. My thoughts are with you all...and I'm sending you warm hugs.

Happy New Year

2009-12-31T08:13:00.001-08:00

Happy New Year everyone! I can't wait for 2010!

Sickle Cell & Depression

2009-12-21T01:42:00.000-08:00

Question: How do you stay positive when you have sickle cell and its causing other significant health problems?

It can be quite easy to slip into the doldrums and depression, especially when it feels like we are constantly beset with one physical ailment or another. I can't claim to be just a 'happy person' or that "God's grace is sufficient...." Realistically...when the doctor comes to your hospital bed with the 'bad news' face...nothing in that moment helps as you feel your heart dropping to the bottom of your toes.

I will truthfully acknowledge that as a sickle cell warrior, I go through the same dark moods and gray emotions and everyone else. You aren't immune from feeling sad, angry or depressed...it's how you cope with it, that is what sets one apart from others. Depending on how dark my emotional bout is, I usually do a variety of things.

1. Relax: I do whatever it takes to make me relax. Sometimes it's a hot bath, self mani/pedi or a good book. Sometimes I just lie in the dark, listening to my breath and good music. Sometimes I go shopping...or immerse myself in video games. You have to find something to do that just makes you relaxed and mellow.

2. Rejuvenate: It can be hard to be emotionally strong when it seems like everything is falling down. For me, I realized last year that it's okay, I don't have to be strong all the time. It's okay to let loose and cry, and to wallow in my emotions. Usually at the end of the session, I feel much better, having those emotions drained out of me. Holding on to negative energy and emotions leaves me tight and frustrated. Rejuvenation is a process of letting go of all the emotions...the anxiety, the fear, the tears, whatever it is.

3. Conversation: Have you heard the saying, a problem shared is a problem half solved? When I get so upset, and none of those steps above help, I usually vent to my best friend. She doesn't have sickle cell, but I just unload all my emotions on her. Talking about it...even though she can't physically do anything to help lifts a huge load off my shoulders. No man is an island, and we can't go through this alone. So find your 'person', that you can talk to about this, and just go ahead and vent. Blow off the steam and let it out.

4. Realization: I realize that God gave me sickle cell for a reason. And my life is one of testimony. Surviving and loving my life with sickle cell is just another avenue of that testimony. I feel that I have sickle cell, not because it's genetic, but because of a purpose, because it's part of my destiny and there is a reason for the agony and pain.

That is usually my process. I try to relax, and if that fails, I let those emotions out. I cycle through all of the steps until I'm able to once again reach my center. Yoga and exercise do help...I find that when I"m feeling better about my body, and feeling physically fit and strong, I tend to get less depressed. I'm also a big fan of music...I have a playlist on my iPod and computer for those dreary days. Find the music that motivates you and imbues you with strength. Sing out loud. Dance.

Revel in your body and in your existence. I'm alive! That is the most beautiful thing of all. I could have been dead since my childhood or any other age between then and now. But I'm alive. I'm living...and life is wonderful!

Sickle Cell Documentary Photo Collage

2009-12-17T18:09:00.001-08:00

Project Hemoglobin S December 17 at 1:13am Report

Our Documentary needs faces!
We have a collage we're featuring in our film of Sickle Cell Survivors! If you would like to have your picture featured in our film during our collage of Sickle Cell Survivors Contact Us! We'd Love to have you! Let the world know you have Sickle Cell, Sickle Cell does not have you.

The process is simple:
Email us stating your interest
We forward you a release form
Take a cool picture of yourself, scan it and submit it to us as a jpg or bitmap file along with the release form allowing us to use your image in our film and that's it!

It's all that simple!

Submissions go to :
docprjtquery@demarfilms.net

Minority Nurse Article

2009-12-12T20:50:00.000-08:00

Here is the Minority Nurse article I got featured in last year. It's titled Providing Culturally Competent Sickle Cell Care.

So I guess now you know my real name:)

Blood Stem-Cell Transplant Regimen Reverses Sickle Cell Disease in Adults

2009-12-11T01:22:00.000-08:00

Hey everyone, someone sent this to me today. I can't believe it but it looks like adult blood stem transplant to reverse sickle cell is officially a reality! WOOHOO!!! I know the study is still in its experimental stages, but I can't help it but to be totally stoked and excited.

A team led by Dr. John Tisdale at the National Institutes of Health is performing experimental blood stem cell transplants for sickle cell--using stem cells from healthy siblings.

Health care providers — and sickle cell patients and family members who may be interested in joining NIH blood stem-cell transplant studies — may call 301-402-6466 for more information. Calls will be returned within 48 hours.
Sources:

Emery, Gene (December 9, 2009). Marrow transplant cures adult sickle cell disease. Retrieved December 10, 2009 from http://news.yahoo.com/s/nm/20091209/hl_nm/us_sicklecell_transplants

National Institutes of Health. Blood Stem-Cell Transplant Reverses Sickle Cell. Retrieved from http://www.nih.gov/news/health/dec2009/niddk-09.htm

Living in a Cold Place with Sickle Cell

2009-12-03T22:00:00.000-08:00

Question: Since your location is in Oregon; could you tell me how you have coped with the cold weather? I'm thinking of moving to a cold area, but I am really scared of how it might affect my health given the fact I've never lived in a cold place before.

I've lived in Baltimore, MD and Berrien Springs, MI...both of which are infinitely colder than Portland, OR. To survive, I usuallly pump up the heat in my home around 69 degrees on mild days, and up to 72 degrees on colder days during the winter and cold season. To save on my utility bill, I also augment with using space heaters versus heating the whole house at night. My centralized heating drops to 67 degrees automatically during the day when I'm not home.

When going out, I always dress as if I'm in a Chicago dead winter; with boots, hat, scarf, gloves and a heavy, lined coat with a hood. Although it might look strange to the locales, I make sure I'm warm at all times when I venture out of my house. Layering is very important, I always wear silk thermals under all my clothes, it's amazing how much warmer you are with silk thermals on. I spend more times indoors during the cold weather and tend to shy away from anything that doesn't involve me going from car to a warmer place indoors. The cold does seep into your bones and make them ache, but that's why layering and dressing for the season is very important. Of course, I do complain bitterly about the cold weather...lol.

Some people state that living in cold places makes them have more crises' but I've found for me it's actually opposite. Because I"m more aware of my surroundings, and dress for the weather, I tend to take care of myself better. When I lived in Cali, I had the most # of crises in one year than I've ever had...and it was mainly because it would be sunny during the day, and the temp would drop at night and I wouldn't be protected.

There are several SCD patients in cold places and we have learned to cope just like you have to with anything else. I wish you best of luck as you make this decision.

Placing the Blame

2009-12-03T02:24:00.000-08:00

Question: As the parent of a child living with Sickle Cell, I once blamed myself and felt guilty. That is no longer the case, however I do fear hearing the words...."Why did you give this to me".

Answer: I must confess, I did blame my parents...not that I have sickle cell--but that they were ashamed of me having sickle cell. Although Nigeria has the highest population of people with sickle cell in the world, it was still somewhat 'shunned' and critiqued because of the lack of knowledge. There were myths that people with sickle cell couldn't have kids, would die young and no one wanted to marry someone with sickle cell.

Consequently, my condition was kept as a big secret in our family for most of my childhood and youth and the shame made me feel abnormal, weird, and different. My parents had often shared with me that they didn't know anything about sickle cell then, but even if they did...they wanted me so badly that it wouldn't have mattered to them. My mom also did tell me that she wishes that she had sickle cell instead of me...(that made me cry).

However, whenever I was sick, my parents were sick right along with me, and emphatically feeling my pain and crying with me. I hated being sick more because I would see how much my crises hurt them, and that just broke my heart.

I hope that your child never throws those words at you, but to me, I know that my parents felt so guilty and regretful already, and I never said it...mainly because I could tell how much they hurt when I was sick. Whatever happens, please make sure your child as an outlet to vent their frustrations with sickle cell. I would have given anything to have a support group growing up, of people just like me...because back then there was so much that I didn't know and so many emotions that I had that I couldn't share with others without sickle cell.

American Society of Hematology Conference

2009-12-01T02:36:00.000-08:00

I know it's probably late for anyone to travel there, but if anyone is in New Orleans...this conference just might be for you ~ by the American Society of Hematology.

I thought you and Sickle Cell Can Kiss My A** readers might be interested in learning about some of the cutting-edge medical research directly impacting today’s patients and tomorrow’s treatment options, including research on patients with Sickle Cell Disease and H1N1, soon to be presented at the ASH 51st Annual Meeting in New Orleans, taking place Dec. 5-8, 2009.

Leading studies and topics to be presented include:

· One less defense for women in the fight against recurrent miscarriages. An increasingly common treatment for unexplained, recurrent miscarriages – a regular regimen of aspirin or other blood thinners – has been found ineffective and only puts women at undo risk, according to new research.

· Sildenafil (the medicine contained in Viagra®) found dangerous for men with Sickle Cell Disease (SCD). New research demonstrates that using sildenafil (more commonly known as the medicine Viagra® and Revatio™) is not effective – or safe – for lowering high pulmonary blood pressure in patients with SCD. SCD is one of the most common genetic blood disorders affecting millions of people around the world.

· Defining the H1N1 profile: Patients with SCD at higher risk, in need of first available vaccine. H1N1 demonstrates a disproportionate incidence rate and increased risk of hospitalization among patients with SCD, according to findings from Johns Hopkins University.

· Advance Care Planning (ACP) linked to improved outcomes of patients with blood cancers. New study demonstrates the correlation between ACP and coping patterns and improved outcomes of patients with blood cancers.

We’d be thrilled if you’d be interested in sharing this late-breaking research and its treatment implications with your readers and those on the Sickle Cell Forum. If you’d like, I can also provide:

· Expert insight from study authors

· Full study abstracts and newly released research results

· Insights on the 51st Annual Meeting and background on the Society from hematologist and ASH President Dr. Nancy Berliner

· Patient points of view

For up-to-date information about the 2009 ASH annual meeting, follow ASH_Hematology on Twitter at http://twitter.com/ASH_hematology (also follow hashtag #ASH09), and please visit www.bloodthevitalconnection.org, which provides hematologist-reviewed information about common blood conditions, risk factors, preventive measures and treatment options to educate consumers on common blood conditions including:

· Anemia

· Bleeding Disorders

· Blood Clotting Disorders

· Blood Cancers

· Women’s Health Concerns

Coming Out of the Closet...

2009-11-29T11:23:00.000-08:00

One of the users of the Sickle Cell forum posted this awesome testimonial about her sickle cell epiphany that I'm allowed to share with everyone. Since my epiphany occurred when I met another sickle cell warrior who was not ashamed about her disease, it's so heartening when other people get the same attitude.

Without further ado, meet Kim.

Lately I've been talking about SC a lot. More than I ever have in my entire life. It is the one thing that I have always avoided and hated talking about.

Back in September I celebrated my 40th birthday. Words alone can't adequately express just how THANKFUL I am to have made it to the BIG 4-0!

According to my doctors, I have long out-lived my life expectancy; however, the Father said otherwise. I’m still here. Turning 40 had a major impact on me in several ways. First, it compelled me to express my gratitude by finding a way to reach out...to get involved in the SC community.

On October 17th I attended my first ever SC event. It was a Family Education event. At that event I had the opportunity to meet and speak to a group of adolescents, ages 13-18, about SC, how it affected my life over the years and and how I've coped with the disease up until present time. It was comforting for them in some way to know that I was 40, relatively healthy and well and that I was stable and had been on the same job for nine years...that I was normal (so to speak). What's more, I was able to share with them the fact it had been more than five years since my last hospitalization!

Unlike their peers, physicians and other health care professionals, I knew not only the ins-and-outs of the disease, I most importantly knew how they felt. It was a very rewarding experience for me.

At that event, I had the honor of meeting a very special young lady by the name of Aaron Washington who has been cured of Sickle Cell Disease through bone marrow transplant. Her mother, Joyce Washington, who is now a dear my friend, is co-founder of the FACE Foundation, Inc.(Family Advocacy Coalition for the Empowerment of the Sickle Cell Community). I have been in constant contact with her and am now offering my talent and time to doing all that I can to aid and assist in bringing about awareness, forming alliances, raising funding for research and support services while serving the SC community.

I have much respect and admiration for Joyce. She is more passionate about the cause than anyone I've ever known or met, myself included. I asked Joyce why she works so tirelessly for SC...why she still does what she does...seeing as her child no longer has SC. She said to me, "How dare I walk away and not do all I can? He saved my baby! I have to do this. I have to do my part to make sure that somebody elses baby can be saved. I can't walk away when there's so much to do. How dare I not thank Him for saving my baby?" Her passion is inspires me!

Turning 40 also forced me to "come out of the closet", so to speak. I never expected to see 40, so despite things working out for me and my life coming together nicely, I really didn't plan for 40. I knew that my turning 40 had more to do with God's purpose for my life than it did with me. Wretch that I am, I didn't deserve 40. I knew this, so I asked God to show me the path that would lead me to my better self. I promised the Father that if He opened the door that I wouldn't be afraid to walk through it. I asked Him to show me how to help someone else cope so that they could not only see 40, but also plan for a life well-lived. I asked Him to take my hand...to give me the courage to speak up and out about sickle cell anemia.

Prior to my 40th birthday, I hated talking about having SC. Wouldn't do it...no one understood anyway and I despise pity! Talking about it just wasn't something that I did...it wasn't an option. If I wasn't sick, I didn't even acknowledge the fact that SC existed. For the most part, I've always looked healthy and but for those who knew me well, no one really knew that I had SC. I have always struggled with having SC and not being "normal". ALWAYS.

There were times when I'd get sick and not let anyone outside of my family know...so much so, that I actually would rather push people away and out of my life instead of fessin' up to having this painful and debilitating disease. Sad, but true.

That time has come and gone. I'm Coming Out!
With 40 came a certain freedom and acceptance that I don't quite know how to explain. I no longer worry about feeling different. I am different, but I really like who I have become. I have had a good life in spite of SC. Yes, it has been quite difficult at times, but I'm still here. Yes, I have had crisis after crisis over the years...some so severe that I actually prayed for and welcomed death...but I am still here! It is not because of my doing but because the Father has made it so.

Yes, now is the time to own this new found freedom. I'm Coming Out! I am no longer ashamed of having SC because it certainly doesn't have me! I am coming out of the closet because I need to be a voice for those who likewise suffer from SC but have yet to find their voice. I'm Coming Out to lend an ear to those who need someone to listen who actually knows what its like to deal with SC. I'm Coming Out to be an advocate for the support of funding for research and support programs for those living with SC. I'm Coming Out because I have a story to tell that God kept me here for 40 years to tell!

Yes, indeed! I'm Coming Out!.

Its not all good, but it certainly ain't all bad either!

Blessings & Peace to Y'all~ K.D.

Sickle Cell & Pity

2009-11-21T22:31:00.000-08:00

Here is a great question at the Sickle Cell Ning Forum.

Why is that when you go into a crisis people tend to give you weird looks and have pity for you? We don't need pity but support...

I think people offer pity what they do not understand something. Like when a loved one dies, friends go to the family to offer condolences, but really...what do condolences mean? Condolences won't bring the person back or ease the pain in the heart. But condolences send the message that I do care that you are hurting and that your heart is in pain. Conversely, to me, I don't see pity as a bad thing, I see it as people telling me that they do care that I am in pain. Plain and simple.

Pain is something that all humans can relate to because everyone has had pain one time or another in their lives. Sure, ours might be more all encompassing, and overwhelming, but pain is a shared human experience.

When people tell me they have diabetes, I don't give them looks of pity. However, when someone tells me they have an incurable cancer ---I pity that. It comes from my interconectivity as a human and my acknowledgment of human frailty. I understand that they are going through a struggle, and I empathize with them. When I was younger, I used to hide from the pity and kept my sickle cell a secret because I didn't want pity. However, this just made it harder to deal with, since noone knew what I was going through, and when I needed support---I found it difficult to get any.

The kind of pity I hate the most is self-pity. That is the one that grates on my nerves. I hate to wallow in a 'woe is me' moment. Sure, I have sickle cell..but there are other people in the world going through much worse and are still smiling. I"m alive, I'm surrounded by people that love me, and I'm blessed to have survived so much.

I feel that with more public knowledge and education, we will be able to have sickle cell viewed as a disease and not as a death sentence. Perhaps when more people understand sickle cell, they realize that it's a condition with ups and downs, and when we are down, we do need more support. But at the center of it, we are just human, like everyone else.

So I guess on some level, pity is a weird form of compassion. I would rather have pity than have someone yell at me and call me a drug addict. I'm just saying...pity is the lesser of two evils. ;)

Sickle Cell vs the Flu and Cold

2009-11-06T03:56:00.000-08:00

Hey everyone, thanks to all the people who have joined the SCW fan page on Facebook. It's another great way to connect.

Here is a great article on the difference between a regular cold and the flu. Since it's Flu Season, and sickle cell warriors are more susceptible to developing greater complications because of a flu, this is valuable information. No one wants to get acute chest syndrome..but something like the cold or flu can lead us down that slippery slope.

Please everyone...get your flu shot! I already got mine, and it saved me from catching whatever it was the hubby brought home last week. Wash your hands as often as possible, and carry hand sanitizer with you if possible. Remember, an ounce of prevention is worth a pound of cure! You can read the full, complete article HERE.

Symptoms	Cold	Flu
Fever	Sometimes, usually mild	Usual; high (100-102 F; occasionally higher, especially in young children); lasts 3 to 4 days
Headache	Occasionally	Common
General Aches, Pains	Slight	Usual; often severe
Fatigue, Weakness	Sometimes	Usual; can last 2 to 3 weeks
Extreme Exhaustion	Never	Usual; at the beginning of the illness
Stuffy Nose	Common	Sometimes
Sneezing	Usual	Sometimes
Sore Throat	Common	Sometimes
Chest Discomfort, Cough	Mild to moderate; hacking cough	Common; can become severe
Complications	Sinus congestion; middle ear infection	Sinusitis, bronchitis, ear infection, pneumonia; can be life-threatening
Prevention	Wash your hands often; avoid close contact with anyone with a cold	Wash your hands often; avoid close contact with anyone who has flu symptoms; for seasonal flu, get the annual flu shot; ask your doctor about antiviral medicine for either seasonal or swine flu.
Treatment	Antihistamines; decongestants; anti-inflammatory medicines	Antihistamines, decongestants, analgesics (ibuprofen, acetaminophen); antiviral drugs within the first 48 hours of seasonal or swine flu symptoms; call your doctor for more information about treatment.

Nicosan Rising

2009-10-30T04:52:00.000-07:00

Okay, so ever since I wrote the Nicosan Woes post, I've gotten several people wanting to know what's the new scoop on Xechem. I've kept my ears to the ground, and after emailing a few great Nicosan friends and supporters, have found out that things seem to be looking better and brighter for Nicosan. I won't go into too much detail on the particulars, since I don't want to jinx anything, but here is the word on the streets...

Although the company Xechem did file for bankruptcy in 2008; the formula for Nicosan doesn't belong to Xechem, it belongs to NIPRD (which is the National Institute for Pharmaceutical Research and Development). Anyway, due to the instability of Xechem in 2008, NIPRD revoked the production license of Nicosan through Xechem.

The factory is still intact however, and several awesome and passionate people have been working around the clock for the last couple of months trying to get everything squared away on the financial and legal front so that production can start again.

Alot of investors are needed to financially back the new management that took over Xechem and this is one of the holdups. However, once the money part is squared away, NIPRD should be giving the license back to the new Xechem (and I'm not sure if it's going to be called Xechem any longer), once the new management has proven that they are capable of running the company and Nicosan the way it's supposed to be run.

The good news is that the people at the helm now are dedicated and absolutely determined to get Nicosan back on the market as fast as possible, and even continue the process to getting it approved in the US. One of the original scientists who helped in developing the formula is also back in the picture, and I know that the company is going in the right direction---finally!

This has eased alot of my anxiety, just knowing that the transition is occurring and the process is moving forward. We still need your prayers and support to get the final kinks worked out in Nigeria with all the stakeholders involved. And of course, if anyone would like information in investing towards Nicosan, I can lead you to the right people.

If anyone has any other information, questions or contributions, please leave a comment or shoot me an email.

Please Vote

2009-10-29T04:23:00.001-07:00

Hey everyone,

I got nominated for this years Top Health Blogger on Wellsphere. All I need is some votes to win. Click here and vote for my blog. Thanks!

Sickle Cell Documentary

2009-10-21T04:34:00.000-07:00

I came across this and thought someone might be interested. I've already sent in a request for more information (gotta do research for y'all first:)

New and Engaging Documentary currently in Production seeks more cast members!

Does someone you know or even yourself have Sickle Cell Disease? We are still seeking individuals and families willing to participate in this wonderful awareness campaign! Tell your story! Let the world know the life of a Sickle Cell patient.

If you or someone you know have a thought provoking story and are willing to share it you are encouraged to respond!

We are looking for fun people with wonderful personalities.
If you are a success story and have beat the odds WE WANT YOU!
Maybe you were told you had a life expectancy of 13 and are currently in your 30s....WE WANT YOU?
Maybe you were told you would be too sick to accomplish or participate in normal life activities and now you are a star basketball player or artist or even doctor....WE WANT YOU!
Maybe you always hear Sickle Cell is a Disease only African Americans have and you are of another race...WE WANT YOU
Maybe you have a loved one who lost their fight but lived a glorious purpus filled life...WE WANT YOU
Maybe you are the proud parent of a newborn and just found out your child has SCD...WE WANT YOU
Maybe you live the life of a normal teenager, only, you have a disease for which your classmates and friends don't understand....WE WANT YOU

Respond now do not wait....be a part of a special group of people collectively creating a body of work that will erase the stigma, educate, and empower those who have no idea what this disease is and how it effects the lives of those who live with it.

All ages are encouraged to respond. This includes Parents of Newborns to 17 years old.

In the meantime you are encouraged to Join Our Fanpage on FACEBOOK. Just copy and paste the link below into your browser and you're on your way!
http://www.facebook.com/pages/project-hemoglobin-s/136802918724

We are a Los Angeles based company and this casting is open to anyone anywhere in the continental United States!

Send All inqueries to the address below and our creative staff will be in touch with you on the details.

Good Luck to you all!

Subject Line: Documentary Interview
docprjtquery@demarfilms.net

Near Death Experiences with Sickle Cell

2009-10-11T22:45:00.000-07:00

I'm sure many sickle cell warriors can relate to having near death experiences. I've been deathly ill a quite a number of times, but out of those numerous admissions, only once can I quantify as being near death.

The first was in 1993. I had Malaria, Cholera and Pneumonia when I was 13 in Nigeria. I had passed out about 10 blocks from home when I was walking home from the bus stop. One of the women on the street recognized me and carried me all the way home. She didn't know exactly where I lived, but some other neighbors saw me and showed her my house. My parents rushed me to the hospital. I don't remember much from that time, but I was in the hospital for 3 weeks.

The second was in 2001. I had gotten acute chest syndrome, and it was so bad that I was placed on BIPAP. In addition my liver enzymes were so high, I was beyond jaundiced, and had to have my a hemapheresis done. This is like dialysis, but they drew out all my blood and infused me with 6 units of fresh blood. My sister said the blood coming out of my body was almost black, the doc said there was no oxygen and the cells had been completely broken down (I had very few viable red blood cells).

The third was just last year, a few days after I started taking Nicosan. It was the flu turned to pneumonia, turned to Acute chest, and I had to be placed on the Ventilator for 2 days as they forced oxygen to my lungs. When I was extubated, I was so grateful to be able to breath normally! I was in in the hospital for 10 days that time.

Most of the time, when I get really, really sick, I don't remember anything at all. I think the forgetfulness is my mind's response to how frightening the whole encounter must have been. I really fear getting into respiratory distress, pneumonia or acute chest syndrome again. It seems to be the pattern of my near death experiences.

What about you? Any near death experiences?

Happy Birthday

2009-10-02T00:35:00.000-07:00

Happy Birthday to me! 29 years and still living!

WOOHOO!

Nicosan Testimonial

2009-09-29T02:31:00.000-07:00

One of my readers who has been on Nicosan for about a year now, has written this wonderful review that I would like to share with everyone. If anyone else has a Nicosan story that they would love to share; good, bad or indifferent; please send it my way. Also, if you would like to ask any questions about this, please leave a comment below or send me an email.

To whom it may concern,

I am an African-American male with Sickle beta Thalassemia and I have been meaning to write something on my experience with Nicosan to give other people trying to manage sickle cell more perspective. Currently , I am school and I hope to graduate soon as an RN. I only mention this to let everyone that I do have a medical background. However, my medical background isn’t supposed to convince you to take Nicosan. My main point is only to illustrate to you that I did EXTENSIVE research into the literature that’s available and am able to understand what the studies refer to.

So I have been taking Nicosan for about a year. I take my pills every day, and don’t skip any days. I usually take them with food because I also take a multivitamin which makes me feel nauseous if taken on an empty stomach. When I first heard of Nicosan I was extremely skeptical. I am very active with staying up to date on current research into Sickle Cell treatments. Hearing of any cure/treatment becomes one of those things that makes you afraid to hope. However, I looked at the early studies for Nicosan and they are very strong. It is very rare to find a double blind, randomized, prospective study. However, I had an issue with the fact that I found this over the internet. My thought was anyone can make claims over the internet and I wanted to speak with someone that actually takes it. Well, I did and I was convinced to purchase them. In a couple of weeks my Nicosan shipment arrives. Well, I still don’t take them because I’m still worried that it won’t work and they could be harmful. Well, I was finally told “what are you waiting for”. To be honest, the fear of disappointment was probably what was holding me back. So I started taking them and below I have written a little bit about my experience. I hope this is helpful.

Onset of effectiveness.
So my experience has been that you really do need to wait a little time to see a difference. The thing that makes what we are doing tough is that we aren’t looking for something to happen, we are hoping for something not to happen and the only the way to prove that is time. Initially, when I begun taking Nicosan I actually had these very small pains in places I normally didn’t. It was almost as if I was having a micro-crises, if that even makes sense. For example, I really can’t remember ever having pain in my hands, but when I first started Nicosan I did. However, these could be easily managed with Tylenol or Advil, but I didn’t take anything because I dislike frequently taking pain medication.

Threshold of Crises
So this factor is one of the biggest differences that I have seen with Nicosan. I am very careful with monitoring my activity level to prevent a crisis. As I have found that an ounce of prevention in worth a pound of cure with Sickle Cell. I can honestly say that I am able to do and be more athletic than I was before taking Nicosan. Although I didn’t do a “double-blind randomized controlled study” or anything, I did keep track of my workout. Before Nicosan I wasn’t able to perform cardiovascular workouts very well. I could maintain a low intensity cardio workout just fine, however, I kept my heart rate low to decrease the amount of oxygen I would need. After Nicosan, I was putting my heart rate higher without any problems. Any pain that I experienced I would just take motrin 400mg. This for me was a very big deal. Now please don’t think that I became a marathon runner by taking Nicosan, I still don’t do certain things like running because it causes me problems the easiest. Personally, I like the elliptical. However, the point I’m making is I am able to be healthier than I was before. I really don’t’ know what my true limit is because I never push it. That’s just a part of managing sickle cell. However, the psychological fear of pushing myself was very strong. This feature is characteristic of many people with chronic disease. Studies have shown that chronic disease affects every part of your life. As a consequence of reducing the “threshold of crises” it reduces my fear of being active.

Quality of Crises
So this area is very subjective. I want to make sure to mention that someone’s experience in this area could really vary. Over the year that I was taking Nicosan I never really had any episodes that I would consider big crisis. However, when I first started and when I got the flu I did have a crisis. Ordinarily, when I have a “real” crisis it lasts about three days, with the 1st day being the worst and it getting progressively less painful by the end. Generally, on the 4th day I don’t have to take any medication. However, after being on Nicosan they were different. The crisis for me actually lasted a little bit longer, however it was significantly less intense and painful. The crisis could basically be managed with less medication and it wasn’t as debilitating. This seemed kind of strange to me and really I can’t say that Nicosan was directly the cause because so many different factors affect the course of a crisis. However, it’s not something that I had experienced before taking Nicosan.

Frequency of Crisis
The frequency of crisis goes hand in hand with the threshold. If it is harder to have a crisis from taking Nicosan then hopefully I will have less of them. This really has been the case. I was free from any significant pain that required medication (including motrin or Tylenol) for almost a year until I got the flu. Plus, I was very active. I was working a lot and very stressed out from school. However, I also made sure to drink 3 liters of water per day.

Story of an ER Visit
My brother has sickle cell as well and I told him to take Nicosan. Well he had only been on it for a week and was on a long flight when he started having abdominal pains. Needless to say, they made him go to the ER by ambulance during a layover. So he called me. Every time a Physician spoke with him he called me three-way. I basically, informed the Attending physician, the resident, and everyone else who needed to know what Nicosan was. I informed them how it works in the body and directed him to look it up on the Cochrane review database (this is a peer reviewed database to evaluate research). Now remember, this is a medication that has orphan drug status in the US, but still isn’t FDA approved yet. Do you know what his discharge instructions said when they let him go? “Continue taking Nicosan as you were” They couldn’t find anything wrong with it. Now, they didn’t prove it worked or anything. But, they didn’t tell him not to take it. I personally, think that fact says a lot.

[Note]
I would like to sincerely thank Vixen for all of her efforts to help support others with sickle cell. Her blog and her willingness to put herself out there for something she believes in is incredible. I can’t remember how I happened to come across her blog, but I did and I would never have found Nicosan if it wasn’t for her. I’m not sure if everyone that visits her blog are really aware at how much of a “secret” Nicosan is. I have spoke with so many people in the medical field who have no idea that it exists and have never heard of it. Now, these aren’t just ordinary people, they are professors and researchers who still don’t know. I have even spoken with medical professionals who are from Nigeria who have never heard of it. So what Vixen is doing is huge. I think we all should appreciate what she has done because I have learned that it’s on us to manage our illness. I realized when I was a teenager that no one can carry my load and that means that they can’t manage it for me. No one can know what it’s like to be you, and because of that I don’t let anyone tell me I’m faking, exaggerating, not that bad, or not in pain.

Mission Statement

2009-09-26T06:57:00.000-07:00

The blog is entitled Sickle Cell Can Kiss My A** and it is a positive and yet progressive platform for me, a sickle cell patient and advocate to explore all realms of thought into sickle cell. There is so much that sickle cell warriors go through (I refuse the term sickler, since having a condition like diabetes doesn't label one a diabeters, or cancer doesn't label one a canc-ler). Sickle cell warriors are in a constant fight on a day to day basis to keep ones head above water, deal with the pain, make the right decisions in life, deal with finances, medical bills and handle the backlash, negative vibes and criticism that having sickle cell brings.

But not everyone can have an attitude of gratitude; and not everyone that has sickle cell is a Christian. My life hasn't been easy with sickle cell, and yet, through all the adversities, I've been able to overcome and live my life to the fullest potential. I'm a registered nurse, have a wonderful family of my own, working on my Master's degree and holding down a full time job. All with sickle cell. My message is that sickle cell doesn't have to own you, you are not defined by your diagnosis and you can live a rich and fulfilling life with sickle cell.

Telling sickle cell to kiss off (or kiss ass), is merely an expressive, a snub to the condition that threatens to overtake ones very existence. Though not the choicest of phrases, many people resonate with this survivor mentality and attitude. Sickle cell is not a walk in the park, it's not roses and cream, it's hard, it's a struggle and only the toughest survivors can cope without wallowing in self pity, depression or emotional lows.

Painting life pretty, ignoring the tough side, and trying to hide the pain and agony that we go through on a daily basis hasn't helped with public awareness--- it's only proliferated the mentality that sickle cell warriors are 'fakers, drug addicts, lazy, malingerers'. I don't bring sickle cell down, I don't make fun of my sickle cell warriors, I just talk about the other side of it...the real side of it. The hard side of it, that all sickle cell warriors go through but don't have anyone to relate with about it.

The public doesn't understand what we go through because NO ONE WANTS TO TALK ABOUT IT. If we don't talk about it, how will they understand? I started my blog because I couldn't find a blog that told the truth...a space that talked about the daily rigors of living with sickle cell. I've talked about relationships, work, sex, exercising, swimming, flying, fear of overdosing, hallucinations...the grittier parts of life that every sickle cell warrior goes through but no one wants to share. Other sickle cell warriors all over the world can relate to this, we are all fighting the same struggle and going through the same things.

There are many people isolated and stigmatized in the sickle cell community, in the USA, and in almost every tropical nation in the world. I've had emails from readers in Islamic countries, South American, Africa countries---even Indian and Asian populations have reached out to me, sharing their stories and building a community. Everyone has their mission, and perhaps the way I speak might rankle nerves; but I'm blunt, unorthodox, unconventional, and very happy to share my sickle cell testimony with the world.

Sickle Cell Disease Stamp ---Do Your Part!

2009-09-26T05:41:00.000-07:00

SICKLE CELL DISEASE AWARENESS STAMP

In 2004 the Sickle Cell Disease Awareness Stamp was created as a part of the U.S. Postal Service's stamp program that celebrates the people, events and history of our nation. It also served as another way for the U.S. Postal Service to continue its tradition of raising public awareness of health and social issues.

Many stamps have been created to support causes. However the only stamp that has gone semi-postal is the Breast Cancer Research stamp. Semi-postal means that the stamp will be priced at a higher price than the current stamp price and the difference goes to the organization as a fundraiser.

With the 100 year anniversary that sickle cell was discovered in the Western world approaching in 2010, we would like to have our stamp reissued as a semi postal stamp. Please write letters to the U.S. Postal Stamp committee requesting this action and include what it would mean to you! It is time for sickle cell disease to have more recognition and this is one way to raise awareness. We all need to take ownership of this project and see it through to the end. The Postal Service needs more business, so after the stamp is reissued we need to make a commitment to support it by visiting the post office and keeping the demand for the stamp high as possible.

Please do your part to make the 100 year anniversary a major milestone in history. The publicity and the public awareness will take sickle cell disease back to our level of prominence as an important health issue that affects everyone!

Shirley Miller
SCDAA Board Member

True Life ---I Have Sickle Cell

2009-09-20T21:54:00.000-07:00

Hey guys, MTV's True Life is doing a story on " I have a life altering ailment or illness." If you are interested getting our story out there then you need to send an e-mail to seriousillness@mtvn.com. You should include your name, location, phone...etc. Let's make sickle cell known to the folks at MTV~!

Sickle Cell Test Plan by the NCAA

2009-09-17T05:21:00.000-07:00

This article was shared at the NING sickle cell forum. The content itself wasn't bad, it just stated that the NCAA was considering mandatory screening of all players to prevent those that have sickle cell trait from adverse health outcomes.

The premise of it sounds pretty good, screen all players to protect the ones with sickle cell trait from dying or passing out due to grueling workouts; but for some reason, I can totally see the potential for this becoming very, very bad.

Remember in X-men, when they started 'screening' mutants. And then it turned out that they were creating a database to segregate them with? That's what I first thought of on reading this article. I can understand why some people are alarmed with SC trait players collapsing or dying, but if you link the sickle cell trait to this; then you are automatically increasing the stigma that sickle cell patients already have. You're pretty much saying that because we have this trait, we aren't going to be good enough to play sports with the 'normal people'. This article really rubbed me the wrong way.

We are supposed to end the discrimination not further perpetuate it. I would like input though...am I going off on a tangent here? What did you think about it?

I just have to add this quote that was towards the end of the article:

The United States has a long history of discrimination against people with sickle cell trait, said Troy Duster, a sociologist at UC Berkeley and New York University. In the 1960s, people who tested positive weren't allowed into the Air Force Academy, and into the '70s people were denied insurance or certain jobs, he said.

It's irresponsible to screen people when there's little scientific evidence that the gene causes death and no specific precautions athletes can take to protect themselves, Duster said.

So what are your thoughts? Speak on it

Taking Nicosan and Hydroxyurea

2009-09-16T07:36:00.001-07:00

I got a question today that I couldn't answer.

Has anyone taken Nicosan WITH Hydroxyurea?

Did you notice a difference?

Have you had any side effects?

Please share your story, either via comments or through my email.

Thanks!

Message

2009-09-16T07:25:00.000-07:00

So September is Sickle Cell Awareness Month...I'm sure many of you already know.

I've been out of the SSA loop for a minute but so many of my readers are going through crises right now that it's breaking my heart. I'm sending warm hugs via cyberspace to everyone that is dealing with a crises or some medical dilemma at the moment. Stay strong, keep fighting, and know that this came to pass.

In other news, I'm in a funk today, I seem to be attracting drama everywhere I turn. My home life is great, my personal life is wonderful...but everything else? DRAMA-VILLE. The Irony of it is that I usually shirk confrontation and play the peace-maker role. So getting in the middle of all kinds of conflict is new to me...and it's freaking me out.

Please send some good vibes my way. I seriously need it.

Nicosan and Lab Levels

2009-09-04T18:43:00.000-07:00

Questions: How long does Nicosan take to boost the HB level? Do you have a patients record or blood test results where I can actual see the improvements?

Answer: It took me about 3 months before my Hgb got a boost, but even then, I just went from my normal baseline of 8.5 to 10.6. I've been hanging in the 10s ever since. I don't have any clinical documentation on this but this is just my personal experience. Nicosan has no claims of improving the blood levels, it just helps to reduce the sickling of the cells by introducing more oxygen into the red blood cells and helping them to retain their round shape. Less sickling means less cells are dying every 10 days, which means less jaundice, and slightly less anemia.

Nicosan doesn't function to increase your HgB levels. The primary function of Nicosan, is to introduce oxygen into the sickle cells allowing them to retain the normal round red blood cell shape. The anemia is a by product of having sickle cells that die every 10 days versus healthy cells that live for 90-120 days. The overall value of Nicosan is that since the red blood cells aren't the sickle shape anymore, they aren't clumping together, hence less pain and less crises. I didn't notice an increase in my HgB values at all...and now, I'm still technically 'anemic' 10.8 at the highest; but don't have any pain, and don't have any crises. Nicosan does not work to reduce the anemia...it works on stopping crises and pain.

Getting Lab Work with No Insurance

2009-09-03T21:19:00.000-07:00

Question: How can I order lab tests if I don't have insurance?

In regards to initiating your own blood tests, you can walk into a pre-employment or non-emergent clinic, and pay the doctor to order it for you. You have to pay for the labs themselves, and the doctor visits, it will come to around $200-$300 for both I believe.

Try http://www.questdiagnostics.com/...there should be one around you somewhere. Or any clinic that does pre-employment screenings, immunizations and drug tests. They are generally not as busy as 'regular' medical clinics and they have an in house physician, PA or NP that can order the labs for you. Then you take the slip to the laboratory and have it drawn, and you will have your results either called in or mailed to you. You have to pay for everything up front though...and depending on what you order, it can get pretty pricey. I've done this only once...it was $75 to see the doc and the labs I wanted were $135. Ask about the prices before you commit and make an appointment before you go so you aren't waiting for too long.

Great question!

Nicosan and Tylenol

2009-09-01T18:36:00.000-07:00

I ordered some for my fiancé and noticed it says u have to be careful when taking it with Tylenol. Which is in about every pain med used except a couple. What problems can you have using Tylenol and Nicosan together do u know? I know you aren't a doctor but if you know anything about it I'd appreciate it.

The only thing that I've found regarding Tylenol and Nicosan is that Tylenol increases the concentration of Nicosan 'en vivo'. This means that Tylenol increases or enhances the Nicosan effect. If she is still on Tylenol all the time with Nicosan, then I would recommend switching to the Children's dose (240mg) instead of the adult 350mg dose. Personally once Nicosan starts working for her, I think her Tylenol intake would decrease rapidly. When I first started, I didn't know about this interaction, and I still took a lot of Vicodin/Tylenol and Norco. Now I still take Tylenol once in a while when I get period cramps or a headache, but haven't noticed any changes in my labs or my physiological response. I don't think it will hurt once in a while. But if after being on Nicosan for several weeks, she's still chronically using the Tylenol products, then definitely have to switch to the Children's dose.

Nicosan Skeptics---I need your story!

2009-08-31T17:10:00.000-07:00

I got a question from one of my readers that I couldn't answer. I used to be a skeptic and require facts, figures and statistics; but I think I'm too much of a Nicosan believer to be able to answer this.

My baby is also on NICOSAN. Can't dream of taking her off it!!!! My elder sister has an 8-yr old who has been on hydroxyurea for the last 6 years. She has had two major strokes affecting the right side and a minor one affecting the right shoulder. I have tried time and again to get her to allow her daughter take NICOSAN but she's refused. Unlike me who leans more to herbal she prefers {Westernized} real medicine which comes with statistical information on success rates, what the medicine actually targets in the body etc. Would you by any chance know of anyone who has had a similar experience and moved to NICOSAN with successful results? I really need to get her on this.

So to other users out there...how did you cross the great divide from Westernized 'real' medicine to herbal remedies and Nicosan? Drop me an email or share your comments.

Nicosan Tingles

2009-08-30T18:21:00.000-07:00

The next few days, I'll be posting answers and questions that I've been getting from my darling readers about Nicosan and Sickle cell. I seem to be getting alot of similar questions, so I figure if I post them here, more people can learn from the same group of questions. If you have any advice, please feel free to leave a comment. We can all learn from each other.

Did the Nicosan seem to cause little tingles of pain for the first 2-3 weeks of taking it before things got better? Not huge pain, but tingles of minor pain...The pain has been similar for me--the first 2 weeks it was minor pain in my legs only which was sorta annoying, then the 3rd week (this week), it is only pain in my knees...The pain isn't crisis '10' pain but annoying enough to take a Motrin...It is about a '6' pain on the scale.

It passes after awhile, but I've learned to take the Nicosan at night so that I can go right to bed and not have to function all day and notice the slight pain....I'm glad to know that the Nicosan changes the shape of the red blood cells to normal. That is a blessing to know.

It does something to my breathing too, as if I can breathe a little better and relax...I noticed that from the very first day. It seems to be regulating everything I'm hoping. Overall I have not had any major '8-10' pain since being on Nicosan, and have cut back on my Motrin usage so I'm very happy about that!

I never had that effect, but one of the other users did mention this to me a while back. He has Sickle cell Thallasemia though, so I wasn't sure if it was something that more people went through or if it was specific to his disease process. He stated that he had minor pain in his hands, feet, and legs, but it was nothing like sickle cell pain, more like L1s (2-4). And that he kept taking it anyway, and after about 4 weeks, he didn't have any pain at all. We figured that it had something to do with the sickle cells that are already in your body. Since Nicosan configures the red blood cells from the sickle shape to normal cells, perhaps the 'sickle cells' in the smaller veins and capillaries need more time to get properly configured. Let me know if this persists after another couple of weeks.

Daily Pain Stops with Nicosan

2009-08-29T18:29:00.000-07:00

I must say that I haven't had Nicosan in about three weeks and have noticed the difference. I didn't realize how much even the simplest pain was a part of my everyday life until Nicosan. I really hope they dont stop making this drug in my lifetime. It has really helped. ~JM

SCW: I was surprised at the effect myself. I stop taking it once in a while, just for about a week or so, to see if I still have pain (or if my some miracle, I'm cured!;). Sure enough, the pain comes back usually by the 5th day. Now I take it generally every day or every other day. I love not having daily pain!

PPH Sickle Cell Drug Trial Stopped

2009-08-24T02:38:00.000-07:00

NIH stops trial of drug for sickle cell patients
July 28, 2009 | 10:46 am

The National Institutes of Health has halted a clinical trial using sildenafil to treat pulmonary hypertension in sickle cell patients after preliminary results showed that the drug was actually increasing sickle crises rather than reducing them.

Sildenafil, sold by Pfizer as Cialis for erectile dysfunction and as Revatio for treating pulmonary hypertension in otherwise healthy adults, relaxes blood vessels, helping to prevent blockages that induce painful sickle crises, which can resemble heart attacks. The new study, sponsored by the NIH's National Heart, Lung and Blood Institute, was designed to show that it would work in adults with sickle cell disease as well. About 30% of sickle cell patients suffer from pulmonary hypertension, a debilitating condition of high blood pressure in the arteries thatcarry blood to the lungs. It can lead to heart failure and death. Researchers tested the patients' ability to walk rapidly on a treadmill for six minutes -- hence the name Walk-PHaSST for the trial.

With nearly a year left to go on the trial, officials halted it when a preliminary study of 33 patients who had completed at least 16 weeks of treatment showed that they were significantly more likely to develop painful sickle crises during the test. About 38% of those receiving the drug had sickle crises, compared with 8% of those receiving a placebo. No deaths were observed.

Because the complications observed in the trial were specific to sickle cell patients, researchers said there is no risk to others using the drug for pulmonary hypertension. The agency recommended that physicians treating sickle cell patients off-label with the drug taper it off over a period of three to seven days to avoid problems associated with abrupt withdrawal.

-- Thomas H. Maugh II from Los Angeles Times

Tips for Flying with Sickle Cell

2009-08-22T20:15:00.000-07:00

So to all my darling warriors that are fretting about their first long trip in a plane...here a a few tips to keep in mind.

Layovers: Do you have a layover? If not, make sure that you stretch your legs periodically to prevent leg cramps. When booking, I always recommend at least one layover for sickle cell warriors. Remember, high altitudes=less oxygen concentration=the possibility of a crises. So heading to the ground for even 20 minutes and getting some normal atmospheric air and pressure helps immensely.

Stretch: I usually walk 5-10 minutes for every hour of my flight, from one side of the plane to the other. This helps to reduce the possibility of getting clots or your legs cramping up. If it's a short flight (less than 2 hours), you might be okay, but anything longer than that...stretching is the key.

Accessibility: Have your pain meds easily accesibile in case you need them. It's very frustrating trying to direct a flight attendant where your pain meds are as you are writhing about in pain. Pack your pain meds in your purse or laptop. Have them with you at all times.

Hydrate: Hydrate, hydrate, hydrate. You can never have too much water. Skip the caffenated drinks and alcohol, both of them are known to dehydrate you.

Snacks: Some flights don't feed you at all, and it's always good to have something in your stomach before you take some pain medication. That way you won't have to fight nausea on top of everything else.

Oxygen: Make sure that your airline has onboard oxygen, they usually do for emergencies, but sometimes, esp if it's a long flight, it's nice to know ahead of time if they have it.

Read my tale of flying here. I must say I learned my lesson after that.

Shutting it Down

2009-08-21T06:24:00.000-07:00

I know that I shouldn't let a few empty barrels ruin the party, but some of the people that are ordering Nicosan are driving me bonkers. All I wanted was to help people, not get harassed on the regular, get scammed, or get my Paypal account in the negative because someone chose to reverse their transaction. I'm seriously considering leaving the Nicosan trafficking to those that are more experienced and business savvy. I can't deal with this stress...it's really not worth it.

I found something that has changed my life, and I wanted to share it with everyone that was suffering from the same affliction that I was. I thought that spreading the good news would help other people have pain free and crises free lives.

Instead I find myself embroiled in drama and bullshit that I have neither the patience or time to deal with. This is not my business. I'M NOT MAKING MONEY FROM THIS! It's sapping too much of my energy to deal with bandying constant insults from virtual strangers. I've gotten to the phase where I want to shut the whole operation down.

Norio is telling me not to be hasty, that I'm helping people, even if I can't see the wood through the trees. But I really don't think I can take anymore of this drama. It's not worth it. I'm willing to pass the baton on.

Speak Up!

2009-08-20T19:08:00.000-07:00

A friend on the Ning Sickle Cell forum is working with doctors at Johns Hopkins to develop training for medical students on sickle cell treatment & care. They want to know what issues we're having with health care treatment.

This is our chance to get on the soapbox and let our voices be heard. So please either respond via comments or send me an email answering the following questions:

(1) What issues are you having with self-management at home?
(2) With health care providers? (doctors, nurses, clinics)?
(3) With pain medication (or lack of proper medication)?
(4) Anything else that pisses you off about healthcare treatment of people with SCD.

Doctor's are listening and now it's your chance to tell them your thoughts.

Let's do it!

Information about Nicosan

2009-08-17T17:14:00.000-07:00

Informational Release from Xechem Nigeria. This is old, but I just came across it so I figured it would help some answer all their questions.

NICOSAN™ is a non-toxic, Phyto-pharmaceutical, product for the treatment of Sickle Cell Disease (SCD). NicosanTM is obtained from the mixture of four Nigerian plant materials e.g. Piper guineese (Seeds), Pterocarpus Osun (Stems), Eugenia caryophyllum (Fruits), Sorghum bi-color (Leaves), in a standard ratio which produce a hygroscopic, reddish-brown powder with a pungent odor.

In July, 2002, Xechem acquired exclusive worldwide license from the Ministry of Health, Federal Government of Nigeria to develop and market NICOSAN™ (HEMOXIN™ in the US).

NICOSAN™ (HEMOXIN™) was shown to be a safe and efficacious medicine for the management of patients with Sickle Cell Disease. As published in the May 2003 issue of the British Journal of Hematology, Dr.Toshio Asakura and colleagues from Children's Hospital of Philadelphia (CHOP), USA and the University of Pennsylvania demonstrated the anti-sickling effects of NICOSAN™ (HEMOXIN™) in transgenic mice.

The quality and standardization of the medicine has been tested and proved by High Performance Liquid Chromatography (HPLC) and bioassay.

NICOSAN™ Characteristics
A 100 % Nigerian indigenous Product.
Product available in Capsules, pleasant tasting with no known side effects.
Dose determined and Clinical Trials conducted.
The pricing strategy will favor the poor and underprivileged.

BENEFITS OF NICOSAN™
1. It is used for prophylactic management of sickle cell disease (SCD).
2. It has potent anti sickling effect on sickled erythrocytes, obtained from patients with SCD and on transgenic mice that produced human sickle hemoglobin, thus useful in preventing painful crisis experienced by SCD patients.
3. It reduces hypoxic stress experienced by SCD patients (due to trapping of sickle cell in lungs), drastically.
4. It removes the incidence of blood transfusion in SCD PATIENTS.
5. It prevents clinical sequel (i.e. painful crisis).
6. It prevents ocular damage

PRESENTATION
NicosanTM comes in two different strengths:
250mg (Children Dose)
350mg (Adults Dose)

It is presented as 30 capsules, packaged in 60ml, HDPE bottles

DOSAGE
Adult Dose:
One (1) capsule (350mg) daily at meal time with water.
Child Dose:
One (1) capsule (250mg) daily at meal time with water.

SIDE EFFECTS
Rare:
Mild non- itching muscular rash
Nausea if taken on an empty stomach
Mild headache.

TOXICITY
- Non Toxic
- Higher doses of 2000mg 5000mg/kg LD50 (A lethal Dose at which 50% of the population of experimental mice were expected to die), there was no death recorded.
- No kidney or liver damage was observed both in human volunteers and in experimental animals during and after the clinical trials, the drug is safe in humans at the
recommended dose.

CONTRAINDICATION
There is no known contra-indication in both mice and human to all the active ingredients. The potash used for extraction and the binding agent (Lactose) are safe for human consumption.

No health hazard was observed, when administered in the proper dosage form.

INTERACTION
It can be safely combined, with other drugs, even the cytotoxic drugs like Indinavir, Zidovudine, Lamivudine and Vevirapine used in the management of HIV/AIDS.

Paracetamol (Tylenol) was found to increase the invivo concentration of NicosanTM care must be taken, when they are co administered.

TERATOGENECITY
There is no known teratogenic effect produced by NicosanTM, even some pregnant women who opted (against clinician's advice) to continue taking NicosanTM had normal babies.

STORAGE CONDITION
To be stored in a dry clean place storage temperature is 25oc. Protect from moisture and humidity.

CONCLUSION
NICOSAN is an effective and safe drug of choice for the management of sickle cell disease (SCD).

WARNING
Keep out of reach of the children don't exceed the stated dose.

Let me know if you have any questions.

Telling Your Job You Have Sickle Cell

2009-08-16T08:32:00.000-07:00

Okay, for starters I've learned the hard way that it's always good to tell your job that you have sickle cell BEFORE you end up in the hospital for a week.

I used to work as a personal assistant, and it was a great job that used my organizational capabilities to the max! I fell sick 2 months into the job, and was in the hospital for a little over a week, and at home the rest of the 2nd week recuperating. Needless to say, when I got back, there was a ton of work to catch up on and my boss was not pleased. She wasn't mean about it, but she stated quite truthfully that if she had known that I would disappear all of a sudden she would never have hired me, or would have hired an assistant to fill in when I was out. I learned a great lesson that day, and ever since then, I've been upfront and honest to my employers and potential employers about sickle cell.

Usually, I don't say anything until the end of the 2nd interview (the one with your direct boss), when the interviewer asks me if I have any questions. Then I state, "Just so you know, I have sickle cell anemia. It's a hereditary condition that flares up once in a while. It makes me have to use my sick days a few times a year and sometimes, when it gets real bad I have to go to the hospital."

That's it. Nice, simple and honest. This usually opens up the ground for them to ask more questions, like what exactly is sickle cell anemia, and when was the last time I was sick. I usually only tell my direct supervisor about the sickle cell, but post-crises, I tell anyone else that asks. I'm not asking for sympathy...I'm trying to spread the word and shake the ignorance and mystique that surrounds sickle cell.

Now I work in the medical field, so people 'get it' more. However, this same speech has been used to interview for an office job, a mall job and a writing gig...so it can be tailored to fit your profession as well. I've never NOT gotten hired because I told them I have sickle cell (knock on wood).

I understand the mentality of trying to hide that you have moments of vulnerability from your potential employers. But sometimes hiding the condition ends up doing more harm than good. Employers love it when they get the full idea of the person they are hiring (so states my HR sister Ms. Diva). And when they do find out later, they might end up resenting you for hiding it, and since they legally can't fire you for being sick, they make your job more and more difficult so you eventually have to quit or get sacked for something totally retarded.

Remember, if you had diabetes, lupus or MS, it would not be a huge deal to tell your boss that this is my condition, and these are my limitations. So apply that same principle to your job now. Honesty is the best policy.

The Crazy Things I Say with Narcotics

2009-08-10T21:58:00.001-07:00

On the Sickle cell Ning forum, there is a great discussion about the crazy things that Sickle Cell Warriors say while they are on narcotics. Personally that hasn't happened to me in a while, but I do remember the days of horrendous hallucinations and crazy conversations. Whoever was at my bedside at the moment bore the brunt of it, and to my sisters, this was just perfect teasing material for later. I rarely remember what I said or when I said it, I'm so far either in pain or out of it, but my sisters still crack jokes on me till this day.

If not for the fact that my family treated it so lightheartedly, I don't think I would have been able to cope with spewing out secrets, random thoughts and whatever popped into my head while under the influence. I'm sure that some have had to go through periods of shame, embarrassment or insecurity due to this. But you know what? It's okay!

I've said some crazy things on drugs. My man states that he loves grilling me when I'm looped up because then 'I really get to know what you feel about issues!' Yep, he does take advantage of my no-filter mode...and since I don't imbibe alcohol, that's pretty much the only time you will get me with my guards down.

The most outrageous thing that I said *(which I didn't remember and deny to this day!), was that I was a hired assassin and killed people with my violin case a la Antonio Banderas in Desperado...lol. I also said I was the Princess of Egypt, and named my seven older brothers in order...threatening that my older brothers were warriors and would come beat up the nurses for causing me pain. (As you can see, I tend to have quite violent hallucinations!)...

Although I do get slightly embarrassed when I'm teased about all the crazy stuff I've said, I just roll with it...it's all part of the experience I guess. I mean, if I let it get to me, then I would become a neurotic mess each time I was faced with the thought of having to take painkillers.

Just roll with it. Let it go. It's not a big deal and comes with the territory. Or else, slap some duct tape on your mouth right after you take pain meds. ;)

Being Sick in Nigeria vs Sick in America

2009-07-28T21:09:00.000-07:00

As a transcontinental transplant, I experienced alot of dramatic changes in how I was treated as a sickle cell patient in Nigeria vs my treatment in America.

Those of you who have read the archives know that although I was born in Nigeria, I only lived there from birth to 4 years old, and then from 10 to 18 years old. During those tween years, I was sick enough to need going to the hospital a few times. I had crises probably a max of 3 times a year, and it was usually during some highly stressful event like my birthday, going to camp, high school graduation or anything that I was under extreme stress and not taking care of myself.

I've gone to different hospitals, both public and private in Nigeria, and the care that I got varied from hospital to hospital, but I never felt stigmatized. The nurses gave me pain medication as ordered on time, and the nurses never gave me placebos or acted like they didn't care. If they had given me a dose and I was still in pain 30 minutes later, they would call the doctor on my behalf as a PATIENT ADVOCATE. If I was in so much pain that I was crying and unable to cope, they would come to the bedside, hold my hand, give me warm compresses or menthol around my knees and keep calling the doctor until they got results. They would help me get washed up, get dressed, force me to eat, even if I was hurting so much that I couldn't...and even though I resented this, my hospitalizations usually never exceeded 5 days.

Fast forward to America. My parents actually pooled all their resources into getting me to the USA, thinking that I would have access to the best medical care for my condition. Here I was, in the land of dreams, the country where people from all over the world pray to come to.

When I lived in southern Michigan and in Huntsville, AL; I was treated well. The doctors/nurses had very limited experience with sickle cell, but they had lots of compassion. They worked with me to develop the best care plan, and I went to the closest hospital whenever I had a crises, my records always transferred however, because it was the same hospital system. I felt like a regular patient, and never felt punished because of my condition.

Until I moved to Baltimore, Maryland, an area that is populated with lots of African-Americans, an area that has access to the best research in sickle cell, one of the best comprehensive sickle cell centers and a high demographic of sickle cell patients. These were part of my reasons for moving to Maryland...had I known, I should have just stayed right where I was in MI.

In Maryland, I got the worst treatment that I've ever had in my life. I was stigmatized, ignored, insulted and abused. In the ER of the hospital where I worked as a nurse; I was discharged still in pain, with no access to a wheelchair, no family member present and having to crawl to the waiting room on my hands and knees waiting for 45 minutes until my sister could come pick me up. I had many close calls with death in Maryland, once having to have a total blood transfusion (hemapharesis), and once slipping into a coma that lasted several days. When I was in the ICU, I was treated very well, but as soon as I got to the Med-surg floor, I once again achieved pariah status.

California was an extension of my Maryland experience...but the medical professionals in Cali were by far some of the most callous people that I've ever encountered. It was in a prominent California hospital that a nurse came in and told me to stop crying "You've had sickle cell all your life, you should be used to the pain by now." It was in another Emergency room that the doctor had me in pain for 11 hours because she refused to increase my dose, having me on 2mg of Morphine every 4 hours (are you effing kidding me?). Her shift ended, and it was only then that I got relief.

I could go on and on and on, and I'm sure that many Sickle Cell Warriors all over the nation can tell you the same thing. When a patient has cancer, lupus or multiple sclerosis; they are given the best possible pain treatment plan. When a patient has sickle cell---they are treated like the bacteria on top of pond scum---and made to feel like they don't matter, they are worthless and their pain doesn't count.

When I see or hear of nurses diverting pain medications, giving placebos in place of real painkillers and ignoring their patient's cries of agony, it makes my blood boil over. So yeah, if we are cynical, jaded, bitter and mistrustful of the medical system in the United States...I'm sure you now can understand.

Mayo Clinic on Nicosan

2009-07-23T19:50:00.000-07:00

Nicosan is referenced on the Mayo Clinic website. We're moving on up!

Check it on the end here

Oldest Person with Sickle Cell is 83

2009-07-18T18:52:00.000-07:00

[NAME REDACTED BY REQUEST] is an eighty-two year old woman who may be one of the oldest American living with Sickle Cell Disease (SCD). She is an advocate of the disease which affects millions throughout the world and is particularly common among people with ancestors in sub-Saharan Africa, Saudi Arabia, India and Mediterranean countries such as Turkey, Greece, and Italy and Spanish-speaking regions of South America, Cuba and Central America.

In the United States, Sickle Cell Disease affects more than seventy-two thousand people and about two million Americans carry the trait for SCD, a life threatening disease that creates unimaginable pain and suffering. Support is probably the most important factor in the life of the patient.

S.C.A.T.T. (Sickle Cell Action Through Technology) is geared towards helping to supplement the needs of patients who find themselves facing insurmountable health as well as financial challenges. Patients from around the country call for advice, or a word of encouragement.

Guess you'll live to be an Octogenarian too!

In the Hospital in Pain

2009-07-16T18:20:00.001-07:00

There is a great discussion over at the Ning Sickle cell board over coping when you are in the hospital in pain and doctors don't believe your pain and ask you what your doses of pain meds are, and when you tell them, they respond "Oh that's too high, that can't be right, I'm only going to give you half of that or less..."

Usually, they ignore whatever you say, and go by whatever they feel is right---which ends up leaving you in more pain, or have your pain and anxiety increase. One of our members detailed a very sad experience where she was admitted to the hospital and was in pain for 4 days!!! The doctor pretty much ignored all her requests for better pain management. I'm sure we all can relate to that in one form or another.

Remember, you have to be your own advocate!

If you are ever in a similar situation like this (and I hope you aren't), take a page from my book. I called the Operator, asked for the Quality Improvement or Risk Management office and left a very upset message. I also told the priest, a social worker and the Unit supervisor. I complained to everyone that came into my room and raised such a ruckus that eventually the CEO of the hospital and the Chief Medical Officer came down to apologize profusely. After that I was treated like a VIP and all my needs were taken care of. Remember, a squeaky wheel gets the most oil. Take that pain you are feeling, cry, scream and make everyone realize that you are there and in pain. It's usually when someone higher in the chain of command gets involved that stuff happens.

It's sad that people with cancer have their pain managed better and are treated with dignity. Sickle Cell warriors are treated like drug addicts, stigmatized, insulted and ignored. When is this every going to end? Grrrrrr!

Sickle Cell costs $$$

2009-07-11T18:45:00.000-07:00

A new study shows that the annual cost of medical care in the US for
people who suffer from sickle cell disease exceeds $1.1 billion. Check out the full article HERE.

They report that the average total cost of care per month per patient was $1,946, with substantial variation across age groups.

Total costs per patient-month were highest in adults, peaking at $2,853 per patient-month for patients aged 30 to 39, and lowest in children from birth through age 9, at $892 per patient-month.

On an annualized basis, the total cost of care ranged from $10,704 for children aged 0 to 9 years to $34,266 for the age 30 to 39 group.

"For an average patient with sickle cell disease reaching age 45, total undiscounted health care costs were estimated to reach $953,640," the researchers report in the American Journal of Hematology.

Roughly 80% of the costs were associated with inpatient care; 3.2% of costs were associated with emergency department (ED) use, 0.9% with physician visits, and 3.6% with prescription drugs. The remaining 11.7% of costs was from "other care," including home health and nursing home care.

Also, they note, "The high proportion of sickle cell disease costs associated with inpatient hospitalizations suggests that interventions that reduce complications such as pain crises could be cost-effective, even cost-saving."

Check out the full article HERE.

Beautiful July...

2009-07-07T01:45:00.000-07:00

Hello! What's up everyone?

I'm still here, chilling in Portland, enjoying wonderfully beautiful summer days. For the 4th, of course I hit up the waterfront and did the fireworks thing...it wasn't as spectacular as last year (dratted economic crises!), but it was decent.

When I was leaving my house that hot summer afternoon, my friend asked me why I was carrying my bulky sweater with me. Later that night as she shivered in the arms of her beau, I wrapped myself in my blanket and sweater, comfortable and warm. I guess having sickle cell has taught me to always be prepared for the cold!

On the Nicosan front have no fear peoples. The winds of change and progress are making their way slowly but surely to us. Hopefully things in Nigeria with XECHEM will be resolved soon.

As you can see, my blogging has become once a week. If you have a question that you would like answered about sickle cell anemia, shoot me an email or leave a comment. I'm not expert, but I can only tell you how I've dealt, am dealing and coping with the issues that SSA brings.

Ciao!!

Seizing the Day...

2009-06-25T10:13:00.000-07:00

Hello everyone!

How are you enjoying the summer? I'm doing great, having all kinds of fun in beautiful Portland. Summer is the only time that it's beautiful and not raining in Portland, so I might as well savor it right?

I've started my exercise regimen again and this time I'm super dedicated. I'm doing a mix of yoga on alternate days with strength training and aerobics. I want to throw in some pilates as well, but I will be building up to that.

I read this super awesome book by Amy Dubois Barnett that I would love to recommend to the ladies in the house. It's titled "Get Yours" and it's an inspirational/self help that encourages you to eliminate aspects of your life that don't make you happy and really set goals and achieve them. I'm working on my affirmation list right now (will share soon) and it's inspired me to do more and clean up shop.

You can be happy in your life no matter what situation you are in, because happiness begins from within. I've met so many people with sickle cell that are the happiest people, sure they have pain, but they are radiant and full of life. I know that it can be hard sometimes when the pain gets you down, and when the negativity of the hospital admissions, and your family stress weighs on you. But part of being a Warrior is that you have to be able to deal with all the stress, and come out on top, ready to fight another day.

Please seize the day and stay happy. Find things that make you happy, take time out for you, and set goals for yourself. Sometimes the only goal that I have is to clean up a room in the house, or wake up early...it doesn't matter what your goals are; the main thing is that you are doing something everyday to accomplish them.

Okay, I'm getting off the soapbox now...off to yoga...ciao!

Juneteenth

2009-06-20T08:24:00.000-07:00

Happy Juneteenth everyone!

I'm up bright and early because Norio is in charge of organizing the music for the Juneteenth festivities here in Portland. On top of that, he's also performing! It's going to be a fun, interesting day...

Hope it doesn't rain!

Global Sickle Cell Awareness Day

2009-06-19T00:38:00.000-07:00

The United Nations and the World Health Organization has declared June 19th World Sickle Cell Awareness Day!! We have our own day y'all.

Congratulations! Right now there is a huge festival in New York (I will be posting info in case you can make it), Cayman Islands, the ATL and all over the world.

Please continue in your efforts for increased knowledge, less stigmatization and increased public awareness with sickle cell. Every little mind that you open helps. You would be surprised how much ignorance is out there. Remember to also wear a touch of something Red. Knowing our genotype, creating an enabling environment medically and socially can also help to spread awareness.

Hug a Sickle Cell Warrior today; show your support and love!

World Sickle Cell Fest in NY!

2009-06-18T13:24:00.000-07:00

World Sickle Cell Day Festival is June 19!!!---that's tomorrow!

Date: Friday, June 19th, 2009
Time: 10:00AM to 6:00PM
Place: Dag Hammarskjold Plaza
47th Street (Between 1st & 2nd Ave)
New York, NY 10017
Event: “World Sickle Cell Day”
with special guest Ruben Studdard (American Idol winner) and many others

The Queens Sickle Cell Advocacy Network, (QSCAN) and Sickle Cell Thalassemia Patients Network, (SCTPN) will be participating in the “First World Sickle Cell Day Festival”.

New York City awareness activity in observance of the United Nation’s resolution, adopted by the 63rd General Assembly, that Sickle Cell Disease is a global health issue and making June 19th of each year “World Sickle Cell Day” for global awareness. The Resolution was sponsored by the Congo and co-sponsored by Brazil, Cuba and Slovenia and was presented to elevate the status of Sickle Cell Anemia as a serious public health concern affecting more than 100 million people around the world.

The Queens Sickle Cell Advocacy Network, Inc. is a 501(c) (3), not for profit broad-based community organization servicing children and families with Sickle Cell Anemia and other chronic conditions. Established in 1989 as the Queens Sickle Cell Community Network, it subsequently became incorporated in 1997 and changed its name to the Queens Sickle Cell Advocacy Network, Inc. (QSCAN).

The June 19th festival is free and will feature music, food, entertainment and also special guests Ruben Studdard. The entire New York City community is invited to attend this event and support the worthy cause.

For more information contact: QSCAN at 718-712-0873 or qscanorg@verizon.net.

Road Trip...Redux

2009-06-13T12:53:00.000-07:00

Last night was my last shift at my now old hospital. I was working there for 6 months, and even though the patients were beyond crazy, and it was like working in the trenches, I really enjoyed my contract and my 'work-cation' in Santa Barbara.

Tomorrow morning, I'm loading up the car, and driving 16+ hours to Portland to be reunited with Norio!!! YAY!. I don't plan to do it all in one day (I'm not crazy!)...especially since I don't plan on being sick for a long, loooong time.

I'm taking the coastal route, and I'm looking forward to the many stops along my road trip. I have my books on CD ready (David Baldacci rocks!), my ipod, GPS and my phone. Oh...and lots and lots of water in the car.

Hope you have a great week,

Catch ya later!

Sickle Cell Poet on Brave New Voices

2009-06-08T03:31:00.000-07:00

This gave me goosebumps...it's like she looked into my whole experience, identified it and put it into words. I think every sickle cell warrior can totally relate.

Check it.

Alternative Therapies

2009-05-24T04:51:00.000-07:00

Okay, let's talk Alternative therapies. I had a list HERE on recommended alternative herbal remedies for sickle cell. Well almost a year has passed by since then, and I've been told and have remembered a few more.

Carao fruit: One of my Brazilian readers mentioned this. Apparently, she has been giving carao to her daughter who is 3, and her H&H goes up a couple of points even if she's in the middle of a crises. It's a tropical origin (South American countries), so if you aren't close to the Equator you might not have access to it. Here is a site with a picture of what carao looks like (apparently it smells weird). I haven't taken it, but I wouldn't mind hearing another testimonial from someone that has.
Cellfood: I used to take this in Nigeria, it was shipped to me from the US. You put a few drops of this liquid into an 8. oz glass of water/juice and sip on it all day long. "CELLFOOD is a proprietary ionic fomula containing dissolved oxygen, electrolytes, 78 ionic minerals, 34 enzymes and 17 amino acids— which provides an unsurpassed oxygenating source, and nutritional delivery system, to every cell of the body. CELLFOOD's unique structure oxygenates and feeds the cells— cleaning and 'tuning up' our body's systems all day long." I fell off the bandwagon with cellfood once I had a crises but you can look at information on it HERE.
L Arginine
Dioscovite: This contains high amounts of thiocynate, which is mainly the nutrients found in African Yam. Read up more about it HERE.
Omega 3/Fatty Acids
Tahitian Noni Juice: Apparently it helps to boost your immune system and reduce pain. This is a statement from another sickle cell warrior..I've personally never used it before. Check it out HERE.
And don't forget the old list HERE

Hope you are all doing well and enjoying the beginning of the summer! Happy Memorial day weekend.

And the War Goes On...

2009-05-19T03:01:00.000-07:00

Hello darlings,

I'm back in action! Oh yeah baby!!!:)

Seriously though, being sick totally sucks. I don't want to have another crises for a loooooong, looooooooong time. I'm not even shooting for a year anymore, I just wanna be 100% crises free.

So my visit to the ED totally sucked as usual. I really wish I could revamp all the emergency rooms in the United States in their ideology and treatment of sickle cell patients. Everyone was nice until the doctor came in to see me...she must have said something because the attitude of the staff totally changed after that. The only person that was cool to me after that was the housekeeper...she helped me walk to the bathroom and stuff while my nurse was doing the whole 'I'm so busy' rote.

It's so sad how sickle cell warriors are treated. When I was in Nigeria, I got treated way better in the hospital by the staff and doctors than I've been in any American hospital. Sad but true.

It's a shame because that hospital was on my short list to work in once I moved back to Oregon. It's a mile from my house, and is a trauma hospital and has the type of unit I want to work in. But after my one and only experience with their ER---that's so not happening....they lost out on an awesome nurse.

To those that have written me and are still waiting a response, I apologize. I will get to it this weekend. Hope u are all doing well. Okay, off to the Sickle Cell Board to check out the peeps there.

Hola!

363 days....

2009-05-12T00:12:00.000-07:00

Where do I begin?

I'm living in Santa Barbara, the site where the Jesusita fires were burning fiercely a mere 2 days ago. Thankfully the fires have now been contained. It started last Monday, and by Thursday, the fires were raging out the control, the city evacuated. Heads up, if you ever have sickle cell and you are where there is smokey fires...GET THE HELL OUT.

I didn't, mainly because the hospital wasn't evacuated and I had to work. I came into work on Thursday soldiering in for my coworkers that couldn't make it in. The hospital ventilation system is old, and according to hospital regulations, the vents must remain on to circulate the 'sick air' out of the hospital. By 11pm that night, I was suffocating on the job, breathing in smoke with minimal oxygen. I thought I was going to pass out. I spent the rest of the night alternating between hugged around an oxygen tank and wearing a mask. It was awful. Thankfully my coworkers pitched in and helped me out, otherwise I don't know how I could have survived the night. Motrin was my friend on Thursday night.

Friday morning, I drove 2 hours to LA. My flight to Portland was thankfully on time, and by early afternoon, I was in Norio's arms, content for a moment. I crashed at home, sleeping for a few hours, breathing in fresh Portland air. Around 5pm, we went to an open house. I was feeling poorly by then, but fighting desperately to stay normal.

At 7pm, my streak was broken. I was only crises/hospital free for 363 days:( I landed in the emergency room, my whole body aching, with tears streaming down my face. My joints were on fire, my chest was burning and I was in full blown crises mode. Thankfully, a little hydration and IV Dilaudid fixed me right up and they discharged me 2 hours later.

I've been in bed since then...fighting hard not to land back in the hospital. For starters...the ER I was at totally sucked, but that is a story for another day. I'm just glad that I'm home, lucid and able to type this without curling up in too much pain.

I have to go back to SB on Wednesday to start work on Thursday, but my body is begging me to take a few days off. I think I will comply. So instead of celebrating my 1 year anniversary of being crises free thanks to Nicosan, I've crashed and burned like everyone else.

Hope you are all well.

Nicosan Updates

2009-05-09T00:10:00.000-07:00

There seems to be some hope on the horizon for Nicosan. I can't go into details yet, but I will once the changes have all been confirmed. I knew that you guys had intercessory prayer mojo backing us up! What warrior doesn't?

Nicosan Woes

2009-04-15T04:00:00.000-07:00

Hello everyone,

I've been digress in mentioning a few snags that have hit Nicosan. I've gotten several emails over the past few weeks that have alarmed me as well as sent me for more information. As many of you might know, Xechem USA filed for bankruptcy last year. Currently there is pending litigation about the dissolution of assets for the company with the shareholders and principal members. In addition to that Xechem Nigeria, the branch that actualy produces Nicosan lost their production license a few weeks ago.

Now what does that mean for you?

First of all, I have no idea. The key players that I've been talking to all have assured me that nothing is going to happen to Nicosan and that production will resume soon. There is still a stockpile of Nicosan in the market, and you are able to get some, but if production doesn't kick back in after a while, eventually this supply will dry up too. Remember, each bottle has an expiration date, so stockpiling any past the expiration date won't do much good.

Which really sucks for us the end user because just as soon as we find something that actually works and has personally changed my life, I feel like it's getting snatched away.

So what can we do to help?

Besides the fact that not everyone is super loaded with cash right now (economic crises, taxes etc), and does not have the millions that it would take to 1. get the formula 2. get it produced and distributed...we can still do something.

For starters, please send a prayer to your spiritual Deity to hook us all up. Not just with Nicosan, but with a solution to this tangible ailment. There are so many avenues for sickle cell research and possible cures, but something always seems to stand in the way. Pray that whatever or whoever is causing the roadblocks will have a change of heart, and seek to help instead of hinder the sickle cell cure pathway. Pray that there is enough Nicosan in the market and that production starts up soon.

If anyone has any ideas or suggestions, let me know. My email address is in the sidebar as usual.

Cheers!

April Fools Joke..not cool

2009-04-04T12:49:00.000-07:00

Hello darlings,

In the interest of full disclosure, I must state that I had pain this week. I actually had to call off of work on April 1st. The pains started as they normally did, twinges here and there, L1s, nothing major, and I ignored them, thinking it was a fluke and would just go away.

However it could not be denied and less than an hour later I was shivering under the blankets in L3 pain all over my body. I had to dig through several boxes to get to my pain medicine (it's been so long, I'd started misplacing them!). I took a Benadryl/Dilaudid mix, 2 Nicosan and some Motrin.

It was so bad...it wasn't the worst pain that I've ever had, but I haven't had pain in so long that I think I have totally forgotten how bad it could get and how to deal. I was shocked at first, and then rapidly unable to cope, crying and everything. So. Not. Pretty. It was so weird, almost surreal like it wasn't me in pain...after all, I was at 11 months pain free!

Grrrrr!

The good news is that once the pain meds kicked in (or maybe the Benadryl) I fell asleep and woke up hours later with localized pain in one leg only. That quickly dissipated throughout the course of the next day and by the 3rd I was right as rain, with only my track record tarnished. My body totally played an April Fools prank on me, breaking my 11 month pain free streak!

Looking on the bright side, it could have been alot worse. I could have been in the hospital in full blown crises mode getting pumped full of pints of blood and poked a bajillion times a day. Okay, that does put stuff in perspective. I've truly been blessed.

Hope everyone is enjoying this fine spring weather. And to those that have written in, I will be responding posthaste, I just have to wade through tons of correspondence at the moment.

Ciao everyone...hope you are all well.

Sickle Cell & President Obama

2009-03-27T17:59:00.001-07:00

My sister sent this to me from a friend of a friend. Guess Sickle Cell is in the eye of our new president after all!

Hi All,

In our continuing efforts to spread awareness about Sickle Cell Disease...Gabriel and I got to meet with Pres. Obama on this past Tuesday! Can you say WHAT A GREAT DAY!

Tuesday was Sickle Cell Awareness Day on Capital Hill! :)
We also met with Congresswoman Sheila Jackson Lee (D. Houston, Texas) ; Congressman Danny Davis (D. Illinois), Congress woman Donna Christensen (D. U.S Virgin Islands); Congress woman Barbara Lee (D. Oakland, California).

But we met with President Obama for 10-15 minutes in the Oval Office. He joked with Gabriel about the gifts Gabriel gave him. He was sooooo kind!

The Austin American Statesman interviewed us both this morning about the story...
There are more photos but this is all we have been given so far. Only the official White House photographer is allowed to take photos of the president in the White House...so I was not allowed to take any photos with my camera. But NOTHING could spoil that day!

It was a HUGE blessing!!!
God is incredibly GOOD!!! :)
Shelly and Gabriel George

Thanks to all those that have sent in links!

http://www.statesman.com/news/content/news/stories/local/03/29/0329philanthropy.html

http://blogs.mysanantonio.com/weblogs/education/2009/03/local-prof-and-son-meet-obama.html

Sickle cell was also included in the inauguration:

http://www.timesonline.co.uk/tol/news/world/us_and_americas/us_elections/article5549233.ece

Bone Marrow Transplant + Chemo is the new 'Cure'

2009-03-24T15:35:00.000-07:00

Hey everyone. I just got this link on some research conducted at John Hopkins University related to sickle cell. The article talks about Chemotherapy as the new adjunct therapy in BMT patients...feel free to go ahead and read it.

According to Sophie Lanzkron, director of the Sickle Cell Center for Adults at Johns Hopkins University, 30 percent of sickle cell patients experience pain 90 percent of days. "This is a tough disease; they have intermittent episodes of excruciating pain — they can’t go to college or have careers. Patients spend their lives just trying to manage the pain.”

With no objective measure of the disease, Lanzkron said patients are frequently stigmatized when they seek medical attention — being mistaken for addicts in search of narcotics — and treated with disdain by emergency-room personnel unfamiliar with the disorder.

The physiological consequences of sickle cell anemia include severe damage to organ systems, particularly to the kidneys and lungs, and can reduce life expectancy for those with sickle cell to the mid-40s. Complications include life-threatening infections and stroke — even in young children.

Children who suffer intermittent attacks miss school with predictable consequences for their lives and for their futures. Meanwhile, their caregivers must miss work to tend to them. Added to this are the health-care costs. Sickle cell patients, Lanzkron said, are often “understandably depressed."

Read the rest of the article HERE

Okay, I know I'm the exception and not the rule, but my life isn't as miserable as this sounds. I went to school, got a degree, have a great, demanding job as a nurse and balance a full life. I think that part of the stigma of sickle cell is also purported that those that 'know' about the disease and the sickle cell patients themselves. Sure, it's not a walk in the park, but it's not a death sentence either. Save me the pity party...I'm not buying any of it.

My life is as vibrant if not more vibrant that my siblings and friends without sickle cell...and yours can be too. Please don't let the dour tones and gray color your views on life. We are not invalids. We just have a painful condition, but with balance, good lifestyle habits, medication and support, it can be controlled. Having sickle cell is not the end of the world.

I'll jump off that soapbox for a moment. The article goes on to talk about Patricia Newton, one of the first cured sickle cell adults. Good for her! Congratulations Patricia. The more I read about Bone Marrow Transplants however, the more I realize that it's not for me. Not only is it undeniably risky, most adults can't find a good match due to the high number of transfusions we've had. Add on the chemo, the long hospitalization (sometimes up to a year), and the lifetime of taking steroids and immuno-suppressant drugs, and it just sounds like the benefits don't outweigh the cure.

Perhaps I would think differently if I was a different sort of sickler. After all, I only used to have pain 85% of the time, and I only had a major crises every 3-4 months. And now on Nicosan, crises and hospitalizations are a distant memory. I don't think I'm the right person to advocate BMT right now...I'm just in a really, really good space.

Sickle cell is not a death sentence. It's not the end of the world. Having sickle cell is like having any other disease, learn it, deal with it, survive it. Don't let your condition own you.

Nicosan Fan Mail

2009-03-12T21:37:00.001-07:00

This letter just brought it home for me...all the stress that I've been going through getting Nicosan to my dear users in the US. It's been difficult maintaining with all the business and economic setbacks both here and in Nigeria, but this note from a Nicosan user just reminded me why I love what I do!

I just wanted to let you know that i have been using Nicosan for a
month now. It has been very helpful. I have sickle cell anemia and
usually have crisis in the month of February when it gets cold in
Philadelphia but I was able to ward it off this year. I just ordered
another pack and I'm saving so I can order the pack of 12. Thanks so
much for introducing me to this drug. I am very excited for my future
now even though i have very few crisis, i am an athlete at heart and
hope i will be able to participate in the activities i love.

Awwwww! Keep doing your thang girl! And I hope Nicosan will keep enriching your life that way it has changed mine.

Research Study

2009-03-10T16:24:00.000-07:00

This is not my research, therefore I do not have additional information about this project. It is being conducted by Kimberly Grace, a PhD student at Alliant International University. For questions and contact information, please click the link to the survey.

For anyone over 18 with sickle cell, please consider participating in this project. It will only take a few minutes. I already sent mine in and am looking forward to the results.

https://www.surveymonkey.com/sicklecellresearch

*Please note that you must be living in the United States to participate AND the survey will be closed in just a couple of days*

Also, feel free to pass this along to anyone you know that may qualify.

Live Your Pain

2009-03-07T09:05:00.000-08:00

Scars that bind
Tears that fasten me to u
Our pain unites us
So be true to this emotion
live without shame your wounds
Carry your head high as the tears flow.
Let the tears fall and express your pain
without reservation, without regret
because the more we share our pain
the closer we become.
Pain shared is real, true, pure
I can’t fake pain, so why do I try to hide the most true part of who I am?
Why are we so ashamed of that which makes us most human?
Why do we hide our tears and fears and put on a mask that is not us?
Void of pretense pain exists to connect us, it exists to remind us, it exists to unite us.

So live your pain
Live it out loud
Let the tears fall
No shame.

By: Kafo, 2009 aka lil sis

Nicosan Research Study

2009-02-25T04:38:00.000-08:00

Hey everyone,

I'm seriously trying to set up a study dealing with Nicosan. The question in my last post has me thinking that there are some unanswered questions. The think most of the skepticism does come from the fact that it's an African herbal remedy versus a Westernized one.

There isn't enough documentation and evidenced based research out there to support Nicosan from the medical perspective. I've gotten alot of questions that even I don't know the answers to, mainly because Nicosan is a medication that has worked for me....but I rarely know how it has been to everyone else.

So here is where you come in. Whoever has tried Nicosan, is on Nicosan and whoever is thinking of getting on it, please email me. I would like to send you a questionaire with just a few simple questions to check out your response. The results will be published anonymously, and the only person that will know the connection will be yours truly.

I can't be a research party of one. The more the merrier.

Thanks!
Email me at vixentales at gmail.

My Nicosan Story

2009-02-17T08:23:00.000-08:00

Here is a question that I got from a reader on Nicosan that I would like to address:

A friend of mine just started on Nicosan 12/12/08, due to lapse in medical coverage and not having monthly blood exchanges, he has been having severe pain every week, resulting in 2-3 ER visits/month since 9/08. Since taking it, the severity and frequency has been reduced, but not as much as we had hoped, and the other day had unexpected major crisis that landed him in ER for 3 days!! 1st time in 2 months. It has worked some,but this was disheartening to both of us, and I know most people are new to Nicosan, but if anyone could post about their experiences, is it working, a lot, a little, not at all? Just so we have something to compare it to? Thanks and I wish all of you "takers" well!!

I will leave this up for everyone to respond to.

This seems to be a trend that I've noticed from emails from other users of Nicosan. I had a friend that started taking Nicosan in December as well, but still had a major crises a few weeks later. He dropped out of it and went back to Hydrea. I felt bad when this happened, but each person has to find the best combination of meds and treatment plan that works for them.

I would love to hear the story of anyone that has been on this medication, even if it was only for a few short weeks.

Personally, (and you can read this in my archives), I started taking Nicosan late April, right before I went on vacation to Hawaii. I took it all vacation long, came home in May, started a new job and fell sick a few days later (Stress, strep throat, pneumonia). I was intubated on the ventilator---so yeah, it was a hard crises. I almost lost my faith in Nicosan right then and there, thinking it was a waste of time and money--or another drug peddled as a 'cure'.

Norio pushed me to continue with it, telling me that Nicosan wasn't to blame for my crises. "The manufacturer states that you should take it continuously for 30-90 days before expecting it to work right? So keep taking it regulary until then!" He theorized that my body was worn down prior to that, and the trip to Hawaii, stress of dealing with family, vacation, school and the new job had all contributed to me wearing down my body. "Now you are starting with a clean slate, your blood levels are perfect, and you will take better care of yourself, and you'll give the drug a chance to work right."

His adamant belief (and constant nagging), made me continue on taking the medication. I marked the days off on my calendar religiously, deciding to write days that I had pain, to days that I had no pain at all. Three weeks later, I realized that I hadn't had pain since I was in the hospital. I thought it was maybe because I had a new transfusion, my lytes were good etc. so I waited for the 3 month mark, when my next crises would normally hit before I believed.

3 months later...still no crises. Best of all, no daily pain. But I've had stretches of 4-5 months with no crises, so maybe it's just a fluke.

I hit the 6 month mark before I became a full believer in Nicosan. And I haven't even taken it regularly (I hate pills!). I would say I take it about 3-4 times a week...yet I haven't been hospitalized once since that last crises in May. I haven't even been to the ER!

So now, we are at the 9 month mark...and counting. My pain pills lie unused in my cabinet, I haven't filled a prescription since last year---I haven't even visited my doctor.

On May 8th, 2009, it will be one year since my last crises.

That is my Nicosan story. Now I want to hear yours! Leave it in the comment section or just email me.

Checking in

2009-02-16T08:17:00.000-08:00

Hey everyone,

How is it going? I've been busy, working alot at the same time trying to ace my Statistics class....grrrrr, I totally hate it! So far I'm hanging on to my A average by the skin of my teeth, but it's been a struggle, I've spent more time studying for this class than I have all the others combined; and we aren't even halfway through yet!

I'm planning a big trip this year to go visit my parents in Nigeria. The tentative date is in June/July so if anyone out there is in Nigeria, I would love to meet with you, have some Maltina and hear your stories. I'll be in Lagos for half the time, and might travel the other half of the time.

I just extended my work contract here in Cali, so I'll be enjoying the wonderful sun until June. It's so beautiful out here...but atrociously expensive. I wouldn't trade the weather for the crappy rain clouds of Portland, lol.

More to come

I'm a Top 100 Health Blogger

2009-02-05T11:28:00.000-08:00

Hi Vixen,

CONGRATULATIONS on your success in the People's Health Blogger Awards Competition. Your readers have spoken, and you’ve been chosen as one of the People’s Best 100 Health Bloggers!

The competition was a huge success, with hundreds of the best health bloggers competing and thousands of votes cast. The competition during the last few weeks was intense, but in the end, your blog http://sicklecellblog.blogspot.com/ was ranked as one of the Best 100. These awards are a recognition by your readers for the contribution you are making through your blog, so you should feel very proud of your achievement! As one of the People’s Best 100 Health Bloggers, your profile now appears on the People’s Health Blogger award page.

I even got a badge too!

Minority Nurse Article

2009-01-29T06:45:00.000-08:00

Hey everyone,

I just got featured in this month's issue of Minority Nurse magazine. The tile is "Providing Culturally Competent Care for Sickle Cell Patients". The author interviewed me and used some of my responses in the article.

Not only that but it's an excellent article that helps to educate the public and medical professionals about the problems sickle cell patients constantly have to fight. If you have a moment, check it out HERE and print it out, paste it places and forward it to your friends. The more people that read this, the better.

http://www.minoritynurse.com/features/health/120808a.html

Announcements, Announcements, Announcements!

2009-01-28T12:20:00.000-08:00

Hey everyone,

If you have gotten your Nicosan shipment and would like to take part in a study regarding that documents the benefits of Nicosan please email me. I'm also interested in Hydroxyurea users or people that use other drugs and alternatives. I'm trying to conduct a pain survey that observes the different non-traditional treatment alternatives to create some documentation for sickle cell patients.

If you haven't gotten your Nicosan shipment yet and it's been 2-4 weeks since I emailed you (or 6 weeks since you ordered), please email me. I'm trying to figure out who has and who hasn't gotten their order.

My email is on the left side of the sidebar, for those of you that don't have it.
This announcement will stay up for a week, please scroll down for fresh posts.

Thanks!

Changing the Image

2009-01-26T17:17:00.000-08:00

Okay sickle cell warriors, it's time for some frank talk. I'm sick and tired of hearing how lazy people with sickle cell are. I'm sure that the majority of us aren't...but for some reason, the public has the notion that we are just milking 'the system' for our pain, are too lazy to get a 'real job' and are drug addicts.

You've all heard my rants about public perception and my efforts to educate those I come in contact with. But standing on my soap box will only educate so many. We all have to join together to change the face of sickle cell.

One of my nursing friends who works in Georgia commented that she had worked with many sickle cell patients, and she made a few generalizations which provoked another one of my soap box tirades. But sitting back listening to what she was saying, I realize that although she was overly judgmental and uneducated regarding sickle cell, the sicklers that she had come across had created a bias in her.

"They just go from hospital to hospital seeking drugs. Some lay in the bed for days, sometimes weeks and don't even brush their teeth. They act like princesses, requesting all kinds of food and pain meds around the clock."

Yes darlings, I did set her straight, but at the same time, I had to listen to what she was saying. She's been a nurse for 15 years, and has taken care of scores of sickle cell patients...yet the majority had this 'victim' mentality.

We are not victims. We are survivors. Stop laying in bed having a pity party...it's just a disease. You aren't dead yet, pain is just another fact of our lives, so please, don't whine and complain that it's the end of the world.

Personally, I hate it when people pity me, it makes my skin crawl. So I do everything in my power to avoid that, and draw strength from within, living my life the best way that I can.

I'm in school, have a demanding job, maintain a good relationship and travel constantly. If I can fulfill my dreams...so can you. Having sickle cell is not the end of your world...so please warriors, no more playing the Victim card. It's so not us.

Yes, we fall sick alot, yes we visit the hospital several times a year...but that doesn't mean that we have to enjoy it. Do whatever you have to do to get out of that hospital bed and back to your wonderful life. Being in the hospital is not a vacation or a walk in the park, it's sheer purgatory and you should be doing your best to get out. Whether it's walking, washing up, eating healthy, hydrating etc...do your best to get better and back to the real world.

Live your life and please be a sickle cell warrior and example wherever you are. Do your part to change the face of sickle cell.

Thank you.

Hydroxyurea...for those who like it...

2009-01-14T11:37:00.000-08:00

I got this from one of my readers and decided to share this with everyone. It was on the comnparison of Nicosan versus Hydroxyurea post. I know that this blog might have become a one note wonder because Nicosan has worked miracles for me...I mean, it's almost 10 months and counting with no pain, crises or negative side effects.

Being that I've never been on Hydrea, I'm not the one to give you an unbiased opinion. So anyway, for those of you that are on the Hydroxyurea band wagon....this one's for you from J.

I was reading your Hydroxyurea/Nicosan comparison, and thought I needed to write you. I am 35 yrs old and have SS. I would say I’ve been on Hydroxyurea for at least ten years if not more. My liver and kidney are frequently checked and are in great shape. When I first began taking Hydrox. in my mid-twenties, it raised my hemoglobin levels from about 6 to 8. It hovered in 7.5-8 from that time until about three years ago. For a while it stayed in the mid 6 range, but the past year it stays at 5.2.

Over the past ten years I’ve been on Hydrox., I typically have been hospitalized once every 2-3 years. This is a massive difference over previous years before Hydrox. where I was admitted a couple times a year in my early adulthood. My number of crisis most certainly drastically reduced the first 8 years while on it, though the past couple have been a struggle.

In regards to side affects from Hydroxyurea, I’ve had: zero hair loss, zero loss of appetite, zero drowsiness, zero nausea, zero vomiting, zero diarrhea, zero constipation, zero stomatitis, or zero anorexia. If we read the possible side affects of every pharmaceutical we take, every single one is going to have a list of scary ‘possible’ side affects. We just have to weigh it out.

So I just wanted to write and let you know Hydroxyurea is a medication that has been of great benefit to me with little or no side affects. The past year or two, it has not been of as great of help to me as previous years; this is mostly due to my age, the severity which SC affects me and the damage done to my body from Sickle Cell. I personally would encourage every person with Sickle Cell--with the approval of your doctor of course—to give Hydroxyurea a try. If it doesn’t work, you can always stop.

New Years

2009-01-01T02:02:00.000-08:00

Happy New Year everyone!

I hope this year brings much success, less pain and more love!

Smooches!

I got an A!

2008-12-23T05:55:00.000-08:00

Hey, I just got my grades for this last semester. I rocked out y'all! My GPA is 3.9 and I'm still banging out straight A's. Oh yeah, oh yeah *jumping up and down*

Anyway, in the spirit of giving, sharing and all that Jazz, I'm going to host the sickle cell presentation I created for my final class project, the one that earned me a resounding A+. The premise of the project is that we were supposed to identify a vulnerable population and develop an assessment tool for them. I created a sickle cell questionnaire...send me a message if you want that, and wrote a paper...and a PowerPoint presentation. It was only supposed to be one teaching tool and the paper, but I kinda went overboard...y'all know how passionate I can be.

Okay without further ado...

Sickle Cell Disease Teaching Presentation

View SlideShare presentation or Upload your own. (tags: sickle cell)

The Girl Effect

2008-12-21T16:03:00.000-08:00

Road Trip!!!

2008-12-15T20:42:00.000-08:00

So I just did a cross country road trip down 101. Whoever said people with sickle cell could not drive long distances obviously has never met me.

I drove 997 miles from Portland, OR to Santa Barbara, CA...all by my wonderful, fabulous self! Much to the consternation of my parents, who wanted me to take Norio or a friend, I packed up Viola (pictured right---->) and headed south.

The first day, I drove through the wintery, snowy passes of Oregon for five and a half hours, and stopped for the night at a hotel in Yreka, CA. I was listening to music, books on tape (The Camel Club by David Baldacci was amazing!), and talking on the phone to my friends and family.

The second day, I drove halfway to San Fransciso...then turned around about 150 miles to visit my friend in Chico, CA...about 70 miles from Sacramento. That was a 7 hour drive. My friend Shay is 8 months pregnant, and this would be the last time seeing her before she delivered her bundle of joy! I spent the night with her talking...and took off early the next morning.

The last day, I drove 9 hours...and drove through SF, stopped at the Nigerian store for foodstuffs and kept on going until I reached Santa Barbara. All in all, I would say it was an awesome first solo road trip. Here's to many more!

So far, no problems, just minor soreness and some aches at the end of the day, but I'm sure a regular driver would have had this as well. I took some Motrin with me which I had to take on days 2 and 3.

I'm feeling great now, I'm down here ready to start work. So here is to defying another sickle cell rule.

The Sickle Cell Blog

Moving...

Open Letter to Nexim, Diamond Bank and Bank PHB

Interview with a Medical Doctor with Sickle Cell Disease

Should a Sickle Cell Trait Carrier Marry Someone with Sickle Cell Disease?

Sickle Cell Patients Go to the Hospital Repeatedly

How to Join Sickle Cell Trials & Studies

Sickle Cell Award

'Mini' Transplant May Reverse Severe Sickle Cell Disease

Sickle Cell Patient Dies in Bahrain:(

Sickle Cell Rules

SC Treatment Clinic Opens in Chicago

Sickle Cell and Ports, Catheters & IVs

Do Not Call me a Sickler!!!

Sickle Cell & Your Period

Sickle Cell and Insomnia

Sickle Cell News

Traveling Abroad with Sickle Cell

Sex with Sickle Cell

Sickle Cell Advocacy & Activism

Sold out

I'm Nigerian!!!

Decisions...

Letters Needed for Nicosan

WEGO Interview

Sickle Cell Advocates & Activism

WEGO Health Interview

Staying Warm in Cold Weather with Sickle Cell

Today's Post

Happy New Year

Sickle Cell & Depression

Sickle Cell Documentary Photo Collage

Minority Nurse Article

Blood Stem-Cell Transplant Regimen Reverses Sickle Cell Disease in Adults

Living in a Cold Place with Sickle Cell

Placing the Blame

American Society of Hematology Conference

Coming Out of the Closet...

Sickle Cell & Pity

Sickle Cell vs the Flu and Cold

More Info on the Sickle Cell Documentary

Nicosan Rising

Please Vote

Sickle Cell Documentary

Near Death Experiences with Sickle Cell

Happy Birthday

Nicosan Testimonial

Mission Statement

Sickle Cell Disease Stamp ---Do Your Part!

True Life ---I Have Sickle Cell

Sickle Cell Test Plan by the NCAA

Taking Nicosan and Hydroxyurea

Message

Nicosan and Lab Levels

Getting Lab Work with No Insurance

Nicosan and Tylenol

Nicosan Skeptics---I need your story!

Nicosan Tingles

Daily Pain Stops with Nicosan

PPH Sickle Cell Drug Trial Stopped

Tips for Flying with Sickle Cell

Shutting it Down

Speak Up!

Information about Nicosan

Telling Your Job You Have Sickle Cell

The Crazy Things I Say with Narcotics

Being Sick in Nigeria vs Sick in America

Mayo Clinic on Nicosan

Oldest Person with Sickle Cell is 83

In the Hospital in Pain

Sickle Cell costs $$$

Beautiful July...

Seizing the Day...

Juneteenth

Global Sickle Cell Awareness Day

World Sickle Cell Fest in NY!

Road Trip...Redux

Sickle Cell Poet on Brave New Voices

Alternative Therapies

And the War Goes On...