I know you have to pay for your treatments but you do have some of the best places to treat this condition. I think we have one in the UK but that only deals in kids treatment and only for those that have had a quick diagnosis. We are so far behind in dealing with this condition that we only had a question raised about it last year i think. Our own consensus put this condition with around 12,000 people in the UK with it, so that makes it a pretty rare condition so little funding or research will be done.