20 April 2011

Bone Marrow Donor Crisis With A Face On It.............

I've re-posted this article on Seun Adebiyi subsequent to reading an update on his facebook page.  He has used this forum to advise supporters and those who care about  his progress as he continues to cope with the possibility of a relapse and guarded optimism for a cure.  He has also been an advocate for the Bone Marrow Transplant Donor Program.  There is a shortage of donors especially within minority communities.  I've provided a link to one  organization's effort to get more people of color interested in donorship for the various transplant programs across the nation.   Two of his entries on April 12th are included as he addresses how difficult the concept of remission is given the death recently of Mandi Schwartz, a well known athlete who lost her battle with leukemia after a cord blood transplant.

#leukemia #bonemarrow:: Compared to the sport of #skeleton, believe it or not, living in #remission is ten times scarier. But I’m learning to roll with the punches. I chose skeleton to build up my courage. I have a feeling that a lot of courage is going to be needed in the road ahead.
#leukemia #bonemarrow:: As #Mandi’s death has reminded me, a #cordblood #transplant is no guarantee of a cure. None of us knows how much time we have left on this Earth. Now I finally see that it's a miracle to be alive.
 I recently viewed a video on Seun Adebiyi posted January, 2010 on The Grio website and thought how extraordinary this young man's life had been thus far.  He was described as a scholar, recipient of a pilot's license and athlete with a number of other accolades bestowed.  Mr. Adebiyi lamented with all his accomplishments...his fight against leukemia and need for a bone marrow transplant overshadows them. The latter could save his life.  Cancer victim sheds light on bone marrow donor crisis.

It was a period of reflection for me as a social worker on the Bone Marrow Transplant Team at an area hospital in the late 80's and realizing...things hadn't changed that much.  It was difficult getting people of color to sign up for the Donor Marrow Transplant Program and I understood their reluctance. There is a history of and also recent disproportionate  incidents in this country of medical negligence, experimentation and apathy towards those of color and mistrust of the system is one of the consequences. I can remember treatment team meetings and the various medical disciplines discussing the suitability of patients for bone marrow transplantation.  It was alarming to me that there was this attitude that people of color would not be compliant with treatment guidelines and care which would have an impact on the mortality stats. It was my role to develop a psychosocial approach to helping the patient and counseling family members with this last ditch effort to save their loved one.  I found myself also advocating and dispelling some of those assumptions about how compliant people of color would be with care.
Make no mistake this was a grueling, frightening and anxiety-ridden process-- not only for the patient but the family. This dreaded fact had a cautionary impact that crossed all  racial and socioeconomic lines.  At the time, mortality rates for bone marrow transplant patients were high and with that in mind; those who were approved for the treatment protocol had to meet strict screening requirements. Recent research would indicate that bone marrow transplantation has improved as a treatment option for those stricken with cancer, certain types of anemia and severe immunodeficiency disease. It remains a daunting process, however, I know of those who've survived  and have done well over the years as a result of it.

This image of Mr. Adebiyi was posted on his facebook page and he cites a successful 6 months thus far and is optimistic about his future.  There are safeguards for those who are fearful of donating bone marrow and things you can do to diminish your suspicions and fears.  Take notes, bring along folks who can help you pose questions. There are stories of successful transplant survivors out there and donors who've not suffered any ill effects from the procedure.  Please do  the research.  We are losing young people as well as adults who may have a fighting chance with this procedure.  Please sign up and remember this face which is one of thousands who could benefit from bone marrow transplantation.  There are  appeals and information for potential minority bone marrow donors at  http://www.DKMSAmericas.org.


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