It is not well known here Birdie. I have been trying to get help here and it's taken me 4 weeks to find someone that knows what im talking about! I did meet someone recently who has this and we had been training together for months! A lot of people don't talk about it either so it perpetuates the silence on this disorder. I think it will start coming out to be known. Just look at this site for proof.I am currently putting together a info pack to send out to relevent health places to try and get it known better here.