Sickle Cell Disease Awareness

 Responses!!! 

This is fantastic news!

~  Mary E. Brown, President & CEO, Sickle Cell Disease Foundation of California

This is very good news …. I had a meeting with Tisdale (the senior author) this summer and heard about these data … this is actually a very big thing …

 ~  Thomas D. Coates, M.D., Department Head Pediatric Hematology/Oncology at Childrens Hospital Los Angeles in Los Angeles, CA; Practices Pediatric Hematology/Oncology and Pediatrics in Los Angeles and Ventura, CA; Professor of Pediatrics and Pathology at the University of Southern California (USC) Keck School of Medicine in Los Angeles, CA, USA.

     I believe that this is a very important breakthrough regarding transplantation for patients with sickle cell disease. Patients and their families should beinstructed to discuss this option with their physicians. There will be more discussion of transplantation using the regimen described in this article at the 8th Annual International Umbilical Cord Blood Transplantation Symposium in San Francisco June 3-5, 2010.  Go to:  http://www.cordbloodsymposium.org/

                  ~  L.D. Petz, Stemcyte

 Read it for yourself!!!

Please read all three because they all report different information.

U.S. & World:                                                              Bone marrow transplant 'gets rid of' sickle cell anemia http://www.latimes.com/news/nation-and-world/la-sci-sickle-cell10-2009dec10,0,3447046.story

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BOSTON (Reuters):                                                  Marrow transplant cures adult sickle cell disease http://www.reuters.com/article/idUSTRE5B853M20091209

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HealthDay News:                                                       Bone Marrow Transplants May Cure Sickle Cell in Adults http://health.usnews.com/articles/health/healthday/2009/12/09/bone-marrow-transplants-may-cure-sickle-cell-in.html

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New England Journal of Medicine Dec 10, 2009                Allogeneic Hematopoietic Stem-Cell Transplantation for Sickle Cell Disease  -  Hsieh MM, Kang EM, Fitzhugh CD, Link MB, Bolan CD, Kurlander R, Childs RW, Rodgers GP, Powell JD, Tisdale JF http://content.nejm.org/cgi/content/short/361/24/2309

A bone marrow or stem cell transplant can cure SCD. Unfortunately, only 10% to 15% of children with SCD have human leukocyte antigen (HLA)-matched siblings who do not have SCD themselves.^* This procedure is highly invasive and prone to complications, such as graft-versus-host disease.  If we could find matches earlier in the life of a person in need, they would have a better chance of curing Sickle Cell and other diseases.

*Wong WY, Powars DR. Overt and incomplete (silent) cerebral infarction in sickle cell anemia: diagnosis and management. Hematol Oncol Clin North Am. 2005;99:839-855.

For more information about bone marrow/stem cell transplants: http://www.marrow.org

The chart below shows by race people on the right who are on the registry and on the left you see the number of people who are in need of a donor and don't match a family member.  Only about 30% of people match another family member.

African Americans/Black have one of the lowest numbers of donors, yet we have the hightest need!  Let's understand why, so we can change it. 

First, we are not in the know about certain things. 

Second, we are not very trusting, because of our past history with the medical community. 

Thirdly, many of us have been on the registry for years and never been contacted as a match.  I've (Nita) been on for over 10 years and have never matched ~ why?  

Many of us are a blend of races.  Many African Americans are mixed with Native American (some from several tribes), White, and others.  Genetically, some of us will never match another, but others will!  I remember meeting an older lady at the Black Business Expo some years ago.  She told me, "Baby I did it, and I did it twice!"  This woman was a beautiful petite African American senior who actually matched two different people in need!!!

She has given us all an example to follow!

This is why we need unrelated donors!  Let's be proactive instead of reactive, because we never know when it can be us or a love one whose become diagnosed with . . . 

If we won’t, the only other way that we can find a way to live is through Stem cells! That is where AB52 comes in . . . . . .