Tags » Dystonia

Look how far

There is an occasion happening in our home tomorrow. Upon reflection, as anniversaries will have us do,  I realised I have not introduced us. I am Shelley. 536 more words


Interview with Dystonia sufferer, Lee Pagan, ADSG Founder!

1. When was the group formed?  

2 July 2011

2. How was it started?

I created a new Facebook group, called it the Australian Dystonia Support Group, and described it as ‘A place where we come together to support each other, while sharing the good, the bad and the ugly’. 671 more words


Horse Riding and Dystonia. Progress Report 28

There’s been a lot of change at our riding school recently. Our “shouty” riding instructor has left and the replacement is proving to be …an improvement. 233 more words



This is one of those blog posts that probably won’t interest anyone else out there, especially not very many in the 11.2-13.1 duplication region.  I’m trying to figure out if there’s any link between the cause of my disorder (dopa-responsive dystonia) which is usually caused by a genetic mutation of the GCH1 gene, and the duplication that Anneliese has.  876 more words


Dystonia Advocacy Day

Every year around this time, people affected with dystonia and other members of the dystonia community go to DC to meet with various state elected officials. 286 more words


Dystonia with menopause on the side

“Please keep in mind that I want this to be a serious discussion about a serious disease,” I asked for the umpteenth time. Even while I said it, I knew that the battle had already been lost. 299 more words


Complex Regional Pain Syndrome

Complex Regional Pain Syndrome (CRPS) encompasses a myriad of injury-induced pain conditions. CRPS Type I (formerly known as reflex sympathetic dystrophy) elicits in absence of any obvious nerve injury, whereas CRPS Type II (previously termed causalgia) is associated with injury to a major peripheral nerve. 1,011 more words