So I thought I should update everyone on a research study I am currently enrolled in. My cousin Jeff participated in the study last year, and found it beneficial, so I decided to give it a try. For those of you who don’t know, or who have never really understood, I have a disease called Spinal Muscular Atrophy, to be technical Kugelburg-Welander. The disease affects my muscles from my hips to my knees, and my shoulders to my elbows. I have enrolled in a study with OSU Medical Center and the World’s leading researchers for SMA. It is a one year study, where I am involved in a double blind study. The drug they believe may be benefical is called Valproic Acid. This is a seizure medication they give to epilepsy patients. The belief is that the medication produces more proteins in the body, which in turn would benefit current muscle strength and growth. So far, I have been taking either the sugar pill or the drug for approx 2 months. There are days when I feel a little stronger, but I don’t know if it is really the drug, or just my mind playing tricks on me!! I go to OSU every 6 weeks for blood tests, physical therapy/exams, lung evaluations and body scans. Needless to say, I may never see and benefit from the drug, but I keep my fingers crossed that down the road…no one will have to deal with this horrible disease. I’m also hoping that being involved in this study may prompt my family to get more involved with Families of SMA and realize the meaning it would have to me if they did. (hint, hint)…. If you want to read more about the disease, and how you can help…go to www.curesma.org
October 19, 2009...3:10 pm
Spinal Muscular Atrophy & Valproic Acid
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