My first post.. so here it goes: I am currently 33 years old, born and raised in a town called Kenora, Ontario, Canada (the sticks). I was after many years of being poked, scanned, and tested I was diagnosed with a rare genetic condition known as Ataxia Telangiectasia (I try to avoid doctors now). When I was younger it did not seem to affect me to badly as my only problems seemed to be that I was always bad at sports and had difficulty with stairs and such. As I got older problems seem to have progressed significantly as I am no longer able to walk, and I seem to feel my muscles slowly melting away. Doctors have tried to give me medications, but they would make things worse. So I gave up on them. I do however seem to respond very well to physical therapy.
But enough about me and my whining. I was hoping to find others that have been diagnosed with A-T to share experiences and hopefully provide each other with tips or ways of dealing with this condition.
I am also here you social reasons and would love to hear from others to share stories, or just to talk J
