Lost Interest

October 16, 2011 at 11:10 am

I quit posting because of so much negativity surrounding the clincial trials at Northwestern – the stem cell transplant program. Seemed like everytime it got mentioned, there were so many offering cautions, that the hope this program brings got lost.

Alice brought a great deal of very reliable information about the sct to this forum – complete with links and clinical information. After she received her sct, she posted in the success stories that she felt cured. And then began a series of ugly and unneccessary dialog on the word “cured”. Well, I was #21 through the same program, received my stem cells back on Aug 23rd of this year and I will stand up and tell anyone that I feel cured. My body is no longer under attack and I can feel the healing. I already have so much improvement, my family and friends are absolutely amazed.

But on this site, oh my! Cautions and word smithing and all sorts of negativity occured. I come here occasionally for the new comers to let people know there truly is hope to kick the CIDP out of the body. I’ve talked to a majority of those that went before me, and everyone agrees it was worth it. Not everyone gets full recovery – it depends on how much damage was done – but WE ALL agree the progression of CIDP is stopped and that makes it worthwhile.

It took me a considerable amount of time and some sacrifice to work out the details of how to pull off the sct, but that time passed anyway and the damage progressed. Now I have NO more damage occuring.

A lot of us have moved to facebook as we felt a few had taken over this site and drowned out hope. There are several CIDP groups, but the one I go to is called “CIDP and Stem Cell Transplant” and the hope on that page is inspiring. No one offers cautions or takes exceptions to the words, they just offer hope and encouragement. And the number of people applying for and going through the sct is growing exponentially because of results posted to this page! I find it very sad that it felt like this forum rejected this hope as I used to come here often for information …

The sct program is being used, VERY succesfully, on ALL autoimmune conditions.