SM - Stop beating me over the head! (jk) I don't mind looking like a freak - it's just a little sad to know strangers won't be smiling at me in admiration like they used to when they saw me alone on the streets.

LMAO - My aunt (mom's sister) is the same way. She could get the meanest look on her face. When I was little, she'd catch me doing something and it seemed she appeared out of nowhere. I'd turn around and she'd be standing there with her hands on her hips, feet planted firmly, and in a very low and menacing voice she would slowly say "What..are..you...doing?" It scared the heck out of me, but then I saw that twinkle in her eye. She does not have my disease though.

My relatives in Finland who had this disease terrified me as a kid. I've been told they were just as loving, but I only saw monsters when I looked into their eyes. They didn't look human to me - they looked like vicious junkyard dogs. No one knew about this disease when I was a kid, and for the most part no one knows about it now. Only immediate family and a handful of aging doctors.