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Tina M.

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1 reviews

Review for American Dystonia Society, Inc., Princeton Juntion, NJ, USA

Rating: 5 stars  

I developed the symptoms of Dystonia 3 yrs ago this August. This disease is rare (probablly not as rare as they think); so all of the numerous doctors I went to shuffled me from here to there. I went through every kind of medical test. My original neuorologist had said it was Dystonia from the start, but why nobody knew. I search for answers. How could I understand something that even my doctors couldn't.
Then I found a small communtiy of people, that were just like me. Had been through the medical turmoil like me; the physical, emotional, and social turmoil just like me. It was through The American Dystonia Society. It's like an extended family; leaning, lifting and learning one to another.
The goal is to educate and then a cure will come! We need people to even recognize and know about our disease. Thank you ADS for all you've done for me and continue to do.

I've personally experienced the results of this organization in...

I've found the website very helpful and used the many informative resources. I've made friendships from the interaction with other people that have dystonia like me. Because of the advocacy efforts my family and friends have a better understanding of what Dystonia is too.

If I had to make changes to this organization, I would...

Make it larger and more well known.

Role:  General Member of the Public & The only thing I'm able to do for this organization is spread the word about their work.