Question Author
Thankyou for being speedy with an answer.
A uk support group would be useful ,as much on the net is American. I know a disease is the same both sides of the pond, but I have read some reports from over there and they seem to offer different treatments.
I've been recently diagnosed with this and wondered if anyone had personal experiece or knew of someone with it. Being rare it would be good do communicate with someone who knows about it.
Facebook have a group but it seems rarely used.
Thanks for your help I will go to those sites.
DD