Hi Theresa,

I read the posts on here all the time. Just want you to know you are not alone. I have my good days and bad days like everybody else on here. Just take it one step at a time - I know it is tough.

I was not diagnosed until I was 35. All those years growing up with it - had no idea what it was called. The only thing that made it bearable for me was that my 2 older brothers have it as well. So, the 3 of us all had it and we never got checked. My parents would say "oh its just your "Stiffes" ". So, that is what we called it all of these years - the "Stiffes".

But I knew something genetic had to be going on - for the 3 of us to have it. So - I was the one that got tested for it and here we are today. So, that is how I ended up on here - listening to other pepole as well with their take on it. Jan also has given me a world of knowledge on the topic.

Anyway - enough rambling - just wanted to let you know we are with you.

Joe C.

Country: USA