All of that is gone now. Despite receiving current standard of care treatments, my disease continues to progress, robbing me of balance and coordination. I am unable to walk without assistance, do yoga beyond a few of the stretches and breathing exercises, or pick up my granddaughter and carry her to a chair. I can no longer work in the scientific laboratory.
I'm trying to get in Northwestern University’s clinical treatment study for SPS (Stiff Person Syndrome). The study costs $125K, cash up front.
The Northwestern autologous stem cell transplant was successful in treating Multiple Sclerosis, and offers some hope of cure for other autoimmune diseases, including SPS. The study coordinator reports that they have transplanted 20 patients over the past 4 years , with a success rate of about 75%.
SPS is a rare disease, with an incidence of about 1 in 1 million. I know of no other past or current controlled clinical treatment trials of any kind for this disease.
The trial closes in 2019.
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