Risks Associated With Sickle Cell Disease Video

Dr. Max Coppes of the Children's National Medical Center, explains to us that Sickle Cell disease may not cause instant death, but there are many risks involved if it is left untreated.
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Max Coppes: What are the challenges? One is to get donors. In the African American population there are not a lot of donors that come forward to be on the registry. There is a risk, every bone marrow transplant has a risk of death. That risk of dying of a bone marrow transplant is usually acceptable to parents of the child that is got cancer. A Little bit different with sickle cell disease, because you might not die of sickle cell disease in next three or four years. So for those parents its much more difficult decision. The risks there are actually not insignificant. You can have stokes and we've got here kids that have full-blown strokes that are paralyzed. So it's not an innocent disease, but it doesn't cause, usually doesn't cause death imminently. So those are two areas that we need to have a better understanding is you know what is it that we need to do with parents to make it easier for them to make that choice. Part of it is to decrease the mortality of bone marrow transplants. So if the mortality with the non-ideal donors might be 5 to 10%, you know that wouldn't be very attractive may be to me unless I've got a child that is severely affected by sickle cell. I would kind of say you I'll take my chances. So if during those 10 years the child develops a stroke, then the risk of the transplant all of sudden becomes much bigger. So it's a catch 22. So our task is to can we decrease that mortality of 5 to 10% and this is where I'm so excited, so this is where it ties with this doctor who is looking at immune modulation because his interest is actually to decrease that chemotherapy which causes a lot of the mortality. So his area of research actually will hopefully affect our ability to decrease the mortality in sickle cell and I think this is we are talking in the next 3 to 5 years. This is not in 10, 20 years. We're actively looking at that. Then looking at how can we increase the donor pool for patients with sickle cell disease and there are ways of tricking the system, tricking the immune system to make them believe that the match is better than it actually. So those are areas of research that we are actively involved in. I would say that those are two areas that we are very much focused on.

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