Editor’s Note: This story share was submitted by Beverly Smith, a retired schoolteacher from Canada.

I was diagnosed after treatment for PTSD and having had a strange rash. The cause was never clear but medications may be linked. I researched dystonia, a movement disorder and discovered information online, in research papers, in social media groups and in networking. I read that doctors wish they knew more and yet they did not have much time or funding to look into the condition. For some patients there are links to genetics, for some to injury. Treatment historically has vacillated and sometimes we patients were treated as if crazy.

However now there is MRI proof it is a real condition. It is only one of several movement disorders though and much less famous. I thought I could help with the data collection and set up through Survey Monkey an international anonymized survey set. IT is huge. There are hundreds of optional categories and questions about everything I had read about. People could answer as little or as much as they wanted. I promoted the site around the world with any dystonia groups I could find and left it up a year. Then I shut down the survey and studied the results looking for patterns researchers could study. It was fun and I hope useful. I then told faculties of medicine etc of it and got encouragement and praise from many researchers and deans. That is heartening.

The full study is posted online. Many like the website I set up too, of the history of the condition, some humorous attitudes people have facing it, some role models who went public about their condition. The Canadian Medical Association let me run a note about the project as a blog in their publication. So that is what one person has done and i found so many others who for decades have been painting, writing, even making films trying to help us all help each other. The website promotes no product or service, is noncommercial.

You may find it of interest: www.dystoniasurveys.org