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Sprat52

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1 reviews

Review for The Myositis Association, Alexandria, VA, USA

Rating: 5 stars  

In 2008 I was FINALLY diagnosed with a rare disease that I had never heard of before. Because of the long journey I had been on, in search of a diagnosis, it was evident that the doctors also were not very familiar with it.
I searched the internet to find out all that I could about this disease called Myositis. There I found The Myositis Association. Their web site offered an abundence of information, but was a lot to absorb.
I signed up to be part of a support group, but found that my area didn't have a suppoert group leader. My wife talked me into volunteering for that position. I fouund that the association was very helpful to give me the information that I needed to start up a group in our large area. This turned out to be very therapeutic for me.
Then I went to my first Annual Patient Conference, where I met many more people that shared one form or another of the same disease that I had. We visited and found that our stories, although different were very similar. I also met the TMA staff and found them to be very dedicated and caring people. You could tell right away that this was so much more than just a job for them. I also met the board of directors, and the medical advisory board. I went to break out sessions where I learned more about my disease, as well as what research and clinical trials were ging on. Learned that The Myositis Association had funded a lot of the research that is going on, to help treat and look for a cure for Myositis.
The Myositis Association has been a life boat in the middle of a stormy sea for me.

Role:  Volunteer