I think its time I share this on FB. Other than immediate family, I havent discussed this publicly yet. Most of you know that I have Multiple Sclerosis (MS). I was diagnosed almost 11 years ago now and fighting this horrible disease has always been a priority of mine. I still look pretty good on the outside. Only people such as my husband notice my outward challenges. I have foot-drop (hard time picking up foot) after walking a mile. I lose my balance easily and have started to fall more often. I have numbness and altered sensation over about 75% of my body. This means I either dont feel or what I do feel is not normal and always changing. My feet, legs, and hands are the worse. I have taught myself to not cringe when my children touch me. I dont sleep well at night from the pain and tightness in my legs. Unfortunately my list goes on, but Im pretty good at hiding it. I dont tell you all this for pity. I am sharing it all so that there is an understanding of where Im coming from and what Im dealing with. Just before Thanksgiving, I learned about Hematopoietic Stem Cell Transplants (HSCT) for MS. These are not embryonic stem cells and this is not the bogus adipose tissue stem cell scam that has been getting attention lately. HSCT consists of chemo to kill off cells (targeting lymphocytes) and then transplanting the patients own stem cells back into the body. This has been performed for autoimmune disorders going on 10 years now. Even though the therapy is offered in other parts of the world, there are only a few clinical trials underway in the US. Northwestern University in Chicago is currently enrolling people for their Phase III trial. After much prayer and discussion with my family, I have decided to pursue HSCT. Before looking into the overseas options, my first choice is Chicago. Unfortunately the selection criteria is pretty strict but fortunately it looks like some of the cost ($125,000) would be covered by our insurance. So far I have made it through the first screening hurdle. They have now agreed to meet me and evaluate me. Steve and I will be traveling to Chicago to meet with Dr. Burt and his team. He will be the one to determine if I qualify for the trial. Right now, I am asking for all the prayers and positive thoughts you all can send our way! I have created this page as a way to share this journey with family, friends, and newcomers dealing with autoimmune disease that are interested in learning about HSCT. I promise to share this journey in its entirety, both the triumphs and the struggles. Here is to 2015 and hope!
Posted on: Thu, 01 Jan 2015 19:47:45 +0000
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