Being thoughtful

As I said in the other posting, I meant in no means to rain on anyone’s parade, but people have to be thoughtful about the potential risks and benefits of anything as serious as stem cell transplantation. I work with lots of children who will, are getting, or have gotten a stem cell transplant for cancer and some for other serious medical illnesses with significant lifelong consequences for which serious medical procedures like hematopoietic stem cell transplantation are sometimes done including some genetic and some autoimmune diseases (the latter being rarer in children). Yes, many of these are cured and very sadly, many still are not despite this valiant and courageous and serious act. I read the face sheet that your post linked to and they, like in cancer, define cure (as is standard in medicine) as no recurrence or progression in 5 years. It says it right there in the summary. I also have read the published reports of the benefits of stem cell transplantation in CIDP. What is published is that it does not work for everyone–the best reports of more than a few patients add up to half. At the GBS/CIDP Symposium, the experts there said it worked for maybe 20%. Many of the summaries actually question the potential benefit in the face of the risks of transplantation including one just published. I do think that the sucess rate is now higher than that (maybe much higher) based on newer protocols and also that the risks are less with non-myeloablative transplants. I do not know what the experience at Northwestern is or how many patients have been transplanted with CIDP there, but some people relapse. One of the papers just published about HSCT in CIDP said that about 5-13% die of complications of the stem cell transplant. Yes, non-myeloablative transplantation is safer, but there are serious risks still and people need to know this as well as the hope that it might work.

All of us fight each day for an ability to be as much as we can be despite this aweful disease. I am not about to give up or quit fighting nor do I ever want to discourage anyone in their fight–I chose the name WithHope for a reason–it is the way that I live life and I want all of us to do us. Maybe it is because I do work with lots of children that have gotten stem cell transplants, though, I want people also to know that the process is not easy nor the results quaranteed. I hope so very, very much that it works for you and all the others that have CIDP. I hope very, very much that the published medical literature and the discussions by the experts at the GBS/CIDP foundation meeting a year and a half ago are far behind the times, but both of these said to have caution and be thoughtful about HSCT and carefully weigh risks and benefits.

WithHope for a cure of these diseases