Story
Why I chose The Dystonia Society
There are many good well supported large charities out there doing a good job, but I wanted to raise funds and awareness for a smaller but no less worthy charity The Dystonia Society. I became aware of this disabling neurological movement disorder while talking to a colleague at work. Like a lot of things in life Dystonia gets more personal to you when you discover a friend who suffers from that condition, so I decided to do some research.
The Dystonia Society has a very informative web site, but
what made me realise how hard this condition must be to live with, was a video on
YouTube. It was about a girl who wanted to raise awareness of Dystonia by
capturing herself having a Dystonic Storm. She is lying down on a couch and describes the symptoms as they happen but then loses the ability to continue and convulses uncontrollably
for several minutes.
Dystonia is an incurable condition, it can be managed with injections and/or drugs, but more research is needed.
Please give your support, thank you.