Sickle Cell Disease Awareness

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About Marrow/Statistics

This page includes:

Keeping It Real about Donating Marrow ~The Whole Story

Medical Guidelines for Joining the Registry

National Marrow Donor Program Vital StatisticsAfrican American Bone Marrow Awareness Month 

December 2009 Update: Adult Sickle Cell persons cured by Bone Marrow Transplants

Marrow Transplants     

Test your knowledge about Bone Marrow         

The HAUNTING SECRET ~ PLAY.  Next Show:

Keeping it real about donating marrow  ~ the full description to avoid confusion!  By Nita Thompson

First Things First

First, it does not hurt to donate bone marrow or stem cells!

Second, bone marrow has never come out of the spine . . .

that’s a spinal tap, something totally different!

On the real, before you register, all you have to do is review the information to see if you meet the requirements.   Yes, there are restrictions, but it is good to know all of the information ~ just because you can’t donate does not mean that you could not receive a marrow transplant, if you had the need and qualified.  We need to empower ourselves to empower others!!  You never know when someone you know would need a marrow transplant.  Don’t forget that you can always donate your time and become a Volunteer Ambassador like me or donate money to BetheMatch or an organization like ours to continue doing what we do to help!

The Regirements (Please read the: Medical Guidelines for Joining the Registry)

To Register

If you do meet the qualifications, just fill out an application and swab your mouth in 4 places, that’s it, that’s all!  You can sign up at a live drive or online.  If you sign up online, after you fill out the application your swab kit will be mailed to you.  Just follow the instructions and put it in the mail, at no cost to you.  If you would like to register on line, please use the directions on our flyer (Flyers on PDF page).

After you complete the application and swab kit, your information goes into the registry.  They don’t hound you.  You may get a postcard ever so often asking you if you still live in the same place, and your other contact info is the same.  If you gave them your email, they will send you something ever so often.

If you are found to be a match, you will get a call telling you that you may be a close match and they will ask you to go somewhere for a blood sample.  After that they may tell you that someone is a closer match and thank you, or ask you are you willing to donate marrow?  If you say yes, depending on the need of the patient, there is one of two ways that you will donate.  They may need your marrow, or your stem cells. 

Preparation

One week before the donation you will be given shots.  The shots will build up your marrow because they don’t want to deplete your marrow when you donate or hurt you in any way, as the donor. 

How will you feel?  Some people have told me that they feel full, like when a balloon is blown up with so much air until it is really tight, there is no give when you press it, but does not pop!  Some people have experiences headaches or body aches.  I remember one person telling me that she had migraine headaches, and she had one the entire week.  I asked her if she would do it again, she said yes, because she saves a life and she would want someone to do it for her.  The feeling leaves when the donation starts ~ like a pressure cooker when the pressure is released. 

The Donation

Marrow (25% time):  If you are a match and your marrow is needed, it won’t hurt because it is a surgery, not a major surgery like open heart surgery, but it is a surgery, so you are under anesthesia!  So you had a weeks worth of injections and you are ready.  Well, you will lay on your stomach, you will feel the pressure from the needle, the fullness leaves because the syringe is filling with your extra marrow.  You may feel sore and that’s it!

Stem Cells (75% time): If you are a match and your stem cells are needed, you will sit in a chair and it is just like donating blood, but exactly like donating platelets.  They will hook one up to take your blood out, it will go through a filter which will keep your stem cells and the other arm is hooked up to give you back all of the other blood fluids! That’s it, that’s all!!!

Afterward

Marrow donors say after words some people feel sore around their lower back and/or butt, like riding a horse when your but goes up and down in the saddle, or like when you do gardening, or exercising.  The feeling diminishes as the days go by.  People have told me that it usually last 3 to 5 days before that feeling is completely gone.  Two people who were heaver in weight told me that they were sore for 2 weeks.  That’s it that’s all!

African Americans/Blacks real challenge

The fact of the matter is as African Americans/Blacks marrow donors, many of us will never match another.  Why?  Because we are so genetically mixed!  People look at us by the color of our skin and label us Black or African American, but most of us as African Americans are mixed with Native American, White, Mexican/Spanish, Asian, African, Caribbean, etc.  Because if this fact we don’t match another!  On average only 30% of family members matches another!  Statistics state that if more of us do get on the registry that the 8%  will grow and the 83% of people who do need a marrow transplant will go down.  Read the NMDP Vital Statictics below!

The one other thing we can do: 

Other than us getting on the registry and donating our marrow or stem cells the only thing else we can do as a race is to keep on having African Americans/Blacks babies and donate the umbilical stem cells to a public bank.  The umbilical cord stem cells don’t have to match closely like the adult stem cells do, but it still has to be matched by race/same genetic marker.  There are Public Cord Blood Banks in CA and other states, but in California that is where AB52 comes in!  It will make CA public cord blood bank better!

Thank you for reading this.  If you have any other questions feel free to email me @ AA4SCDAwareness@aol.com.

+ + + + +

 

A bone marrow or stem cell transplant is a curative for 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/

Medical Guidelines for Joining the Registry

National Marrow Donor Program Vital Statistics

The chart 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 . . . 

View the chart on the PDF Page

July is African American Bone Marrow Awareness Month!!!

9 of 10 Adult Diagnosed with Sickle Cell Cured by Bone Marrow Transplants Articles came out 12/2009

 Read it for yourself!!!

Please read all four 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

Test  your knowledge about Bone Marrow

http://bonemarrow.starlightprograms.org/index.html

The HAUNTING SECRET ~ PLAY.    Next Show:

I have seen this great production.

This play has alot to do with real life, the daily lives of some people and Bone Marrow Education.  We are collaborating on a Sickle Cell Project for sometime next year!  The HAUNTING SECRET will be touring across America!!!  Be on the look out!!!

Next show: 

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