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.