Congratulations for doing well!

February 2, 2010 at 3:33 am

Alice, it is great that you are feeling so much better and that life is renewed. This is truly wonderful and I hope that this is permanent for you and so many others that need this. For all of us, though, I would like to say just a little word of caution in using the word “cured”. By definition of the trial and of the results reported in the medical literature, one cannot say that one is cured until one has been free of the disease for five years after the treatment. This is because there can be relapse of symptoms and inflammation. This may not happen to you or others, but this is a Phase I trial because the exact number of people that can/will be cured from CIDP is not yet known–that is why they are doing the trial. Phase I is the first level of trial to assess feasibility. We all fervently hope that all of you getting this treatment will be cured, but relapses have happened in a number of other stem cell transplantation treatments with CIDP as well as cures–where the disease remains in remission for more than five years. Because stem cell transplant is also so serious–using high dose chemotherapy to wipe out the immune system and then giving back cells to rebuild it, there are serious risks with this procedure. Thank God that you did not have any of these, but there can be life-threatening infections when the immune system is so weak. I say none of this to rain on your parade–it is important for to be positive and to live positive and believe that this will work. It is important for the rest of us in thinking about this procedure, though, to realize that stem cell tranplantation has not worked for everyone (this protocol at Northwestern may be better–it is not officially proven yet for lots of people) and that there are risks with it and it is very expensive and may not be covered by insurance as you know.
We all hope and pray that you remain free of CIDP for all the time needed to officially be called “cured” and that you and others courageous enough to do this treatment let the rest of us know ASAP. A cure in any one patient is a reason to celebrate as so many of the treatments are just to maintain disease from getting more severe. How wonderful to have the disease gone and not ever return (or at least not for over 5 years–which feels like a life-time for those that struggle so much with it!).