Well, once I finally came to terms with the fact that I have dystonia, I decided that I could not be quiet about it, for the following reasons:
- People can notice when I limp or when my arm is spasming and they ask anyway
- I'm not even 30 yet, so I might as well practice telling people now because dystonia and I are most likely going to be friends for a while
- I might meet other people that can help me cope with my symptoms
There began my advocate beginnings- and honestly, I never intended for it to be so big. I just wanted to go to a decent support group and find a ride to Advocacy Day in May. That since has grown into into MANY advocacy opportunities.
..and yes I found a support group and a ride to Advocacy Day in May :P
This blog is a place to go to not only learn about dystonia through firsthand stories, but also help others with dystonia through fundraising and awareness opportunities through daily posting of my diary, media happenings, self help and advocacy links and stories.
I'm not an organization, I am one of over 300,000 people in North America (unknown figure worldwide) with this disorder. I am speaking out about dystonia in the hope that the general public and medical community will research more into this debilitating condition.
Its not going to go away unless more people start making some noise.
Welcome~ now make some noise!