Whenever I have to explain to someone my disease and how it affects me, I find that few people are familiar with it. I know I was unfamiliar with it until I finally self-diagnosed (but it took months for my primary provider to agree).

There are no telethons for us like there is for Jerry's kids. As far as I know, there is no fancy and well-heeled foundation funding research and lobbying Congress.

Where does one go to find statistics about this disease? Numbers of us. Age, gender and nationality?

I don't want to come across as a victim in this, but it would be nice to know how many of us (as a percentage of the population) there are.

Does anyone have leads for where to find such information?

CB