The Pioneer Trail
I did Google your disease and it actually isn't as rare as one might think according to what I read. To be truthful, I had never heard of it until you became a member. There may be no one else that has had stem cell therapy for it. Jeannine and I were two of the very first people to ever receive umbilical cord stem cell therapy for COPD. We just took the plunge because we could find no one else that had had uc therapy. One very brave man, Nassin, did have adult stem cell therapy for our malady and this gave us encouragement, but the lack of information and experience of others wanting uc therapy for COPD was zilch. This may apply to you as well. Since we were in a lose lose situation, we decided all we had to lose was money (this is important, but how important in relationship to losing your life or living in misery and pain?) and we went for it. I have no regrets whatsoever. There are other members that are basically testing the waters too. Harv has had two treatments and a trip to another clinic where he decided against treatment. Karl just got back after being a first. If you read through the posts you will see how many others have pioneered. Maybe you will get a response and that would make my day too. Please keep us posted on your quest.
