Moving...

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

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

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

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

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

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

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

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

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:(

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

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

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

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

Do Not Call me a Sickler!!!

My first video blog.

Sickle Cell & Your Period

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

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

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

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

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

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

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

I'm Nigerian!!!

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...

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

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

Part Two of the WEGO interview is up!

Sickle Cell Advocates & Activism

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

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

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

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.