As a result of that Flue it triggered a condition called Stiff Person Syndrome. SPS is classified as an autoimmune disorder that is similar in form as Multiple sclerosis (MS) but this condition is so rare that it affects only 1 in 1,000000 people.
To be able to understand SPS is very difficult. To be able to diagnose the condition is almost unheard of. I am very glad to have found my Neurologist Dr. Douglas Stuart. It took him a few months but he was able to confirm SPS. Every Dr. that I see has to Google the condition before they will even treat me.
To describe what by body is doing is not easy. On an average day it would be as if you woke up and strapped a 10 LB weight to your neck, both wrist, and both ankles. Carry that around all day and that would be close. The condition involves extreme rigid and Stiff muscles that can even get so rigged that the can break bones wile just sitting in a chair. My condition is getting or progressing as I age. Loud sound or sudden movements can and have stiffened my body as to were I have actually fell over like a tree being cut down. I do not get depressed about it, I'll look up and maybe say a few choice words and laugh away the pain and say one day I'll have a day with no pain.
I am now able to walk due to a device called a Intrathecal baclofen pump. That device delivers medication to my spine to control the spasms in my legs. Without that device I would not be able to walk. Over the years I have been trying things that would improve my quality of life. I have traveled to Washington DC, to Chicago trying to get into the trial studies for the Stem Cell Transplants. I am not able to receive this treatment due to the FDA guidelines for this quote Study.
So here we are. I have been accepted for a Bone Marrow study that will take place in Tel Aviv, Isreal this spring. If all goes well with the replantion of the boan Marrow I will proceed with the full transplant. This treatment has over an 80% CURE rate for my condition. It is a very rigorous treatment as to were they harvest my Stem Cells, then I receive 5 days oh chemo. After the chemotherapy has left my body they replace my own Stem Cells. This process takes about 6 to 8 weeks to preform. With this treatment my body will in essence Reboot like a new computer after a hard reset.
My family and I know all of the risk involved. I am ready to begin my life over in a healthy pain free body. We have raised 9,500 of the 75,000 needed for this treatment.
Rob and Family
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