I had not heard of it before, but after reading about it on some sites, I realized that I have known people that had it. I just didn't know what it was called.
Have you done a google search yet? There are tons of information on this condition.
Well agnespuffin I have researched it and it is very rare, my Dr. told me it was nothing that you inheirit but they dont know what causes it .he said it was deep in the middle of the brain so they have know why of noing what causes it ...I told him they could have my brain when I died and he said ok ...lol its not a fun thing to have but i live with it ,
I haven't heard of it, but as a person with a rare skin disorder I find talking to others with the disease is very helpful. Here is a link to a forum you can join to chat with others that have ST.
agnespuffin
lillykayOriginal Author
lydia1959
lillykayOriginal Author