I was lucky and stumbled across The Dystonia Society’s Webpage quiet quickly (http://www.dystonia.org.uk/). Their website is packed full of easy to understand information and resources. It helped me come to terms with my condition and understand fully the condition I was dealing with. Previously I had not understood that it was my brain sending incorrect signals to my muscles causing them to go into painful spasms. I had simply thought they were just spasming.
The Dystonia Society over the last couple of years have been a wealth of knowledge and their helpline has been of great comfort. Another fantastic site is The Dystonia Medical Research Foundation (https://www.dystonia-foundation.org/). This is the American equivalent of the The Dystonia Society and is another resourceful website, providing fantastic information on the condition and advice. Websites such as these two are a great resource for suffers to use as a tool to educate Doctors, health professionals and family members who don’t understand the condition. They even have a have section for schools. I find myself checking these sites constantly for new material I can use to help advise others and am never let down.
Please also check out today’s awareness VLOG on Youtube https://www.youtube.com/watch?v=JEGq26wHwpo&feature=youtu.be
