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.

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.

'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.

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 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

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!

Sickle Cell Documentary Photo Collage

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

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

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

More Info on the Sickle Cell Documentary

Addendum: Anyone interested in sharing their story can followup on this. Shooting will be done in LA, and you will be flown in for the feature interview. Hope this helps!


If interested, send an email to docprjtquery@demarfilms.net

We are producing a feature length documentary on Sickle Cell Disease and those who live with it. Currently in production, the film's interviews will start in the spring of 2010. We are seeking encourage individuals who are sufferers of Sickle Cell who have remarkable stories of triumph over this disease, lost a loved one to complications, or are parents of children with SCD. We will interview them allowing them to share their stories on film. We are also seeking video blogs of suffers going through a crises. Preferrably filmed inside the hospital. Those submitting their video blogs must reply back stating they wish to do so for further information on the submission process. Those wishing to be interviewed in Los Angeles with the Producer/Director must reply back with their full legal name and contact information so one of our producers may contact you
with further information and a brief phone interview.

Thank you for your time and participation!

Regards,
Production Team
Project Hemoglobin S 2010

Nicosan Rising

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.

Sickle Cell Documentary

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

Nicosan Testimonial

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.

Sickle Cell Disease Stamp ---Do Your Part!

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

Sickle Cell Test Plan by the NCAA

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

Message

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.

PPH Sickle Cell Drug Trial Stopped

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