Our Surveys (and Results)

In 2003 we created a online survey that focused on the issues of medical care and dystonia with a high participant rate of 249 individuals suffering with various forms of dystonia. Since then, we have conducted additional surveys. Your input has been valuable.

Dystonia 2003 Care Survey (PDF format)

Dystonia Care Survey 2007 (PDF format) Quality of life with dystonia and pain

Dystonia 10 Minute, 10 Question Survey 2008 (PDF format ) Depression, DYT1 gene testing, current treatments

You can now access the 2003-8 Dystonia Care Survey results. If you are a healthcare professional, feel free to download the file and evaluate the results of the survey. Feel free to send us your comments via infoc4d@aol.com.

New 2009 Care Survey to be released in April 2009. Let’s focus on physicians!

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Your Survey Comments ( sample only ):

  • Good Survey Beka! Keep up the good work! And thank you again for the magnets. Handing them out slow but sure. Blessings, Luanne
  • It takes so long to get a diagnosis on dystonia that it is a very lonely process. Doctors have limited knowledge on dystonia. The support of other sufferers is critical.
  • Thanks for persisting in making this survey accessible. I will forward it to some of our members with ST.
  • Its a nice feeling that someone cares and are interested in my experience. Göran
  • Occasionally I come across the phrase “Together We’ll Find The Cure!” As encouraging as it may be to some, it just makes me want to puke my guts out! I don’t want slogans or sound bites, and I don’t want anyone blowing smoke up my @$$. All I want is information - I just want to know what works, what doesn’t, what looks promising, and what’s being done in the way of research. Basically, I just want all the information available, and in plain English, with as little medical jargon as possible.
  • I thought this was a great survey, thanks. I hope this will help in some way so more people (doctors especially) will know about dystonia. I got my SSI for hysteria because the judge, doctors etc. in Chicago did not know what dystonia was. With the DMRF in Chicago there is no excuse for that.
  • Care4Dystonia is the only site that provides true support for those of us living with ST on a daily basis. The site is open to the idea of alternative treatments. Each of us must find the treatment that best works for us. No one treatment is perfect, and sometimes a combination of treatments, or no treatment is the answer. Each of us must determine that for ourselves.
  • You, Go, Girl. You got the best Dystonia site out there!
  • I like participating in surveys. I think feedback from people with ST can only help.
  • Thank you Beka for your dedication to dystonia patients!
  • I filled in the survey earlier, but one thing that struck me afterwards was that there was next to nothing about work, being able to work or not. That can be such a big determinant in quality of life issues, feeling of worth, earning a living, paying ones way in society, being able to participate in society economically and socially. (Noted ~ beka )
  • No one understands dystonia, not even my husband. To be able to socialize and chat with others who have the disorder would be a relief in some ways. I don’t benefit from pity parties, though. I desire uplifting, inspiring support from others with dystonia. We need an Alanon-type structure, where there are a few guidelines to keep the sharing and support beneficial.
  • Thank You for making this wonderful survey. Thank You for the chance to take this survey. I feel like I had a chance to vent my frustrations in a healthy manner and I feel more connected to others with ST, I don’t know why I feel that way but I do. I guess I don’t feel so alone. I DO feel like someone out there cares. Thanks Beka!

Copyright. C4D 2007. Any Content lifting or use of the above comments for the enhancement of other sites is prohibited. ~ beka