Behcets disease

[lauraa11en]

I was just wondering if there is anybody in the south or west wales area that has been diagnosed with Behcets disease? It would be really nice to find someone to chat and share experiences with.

[John_Mills Volunteer]

We have contacts in Wales Laura, but in South Wales, if this helps. We also have contact with a lovely lady who has Behcets Disease from the south of England who we can put you in touch with others.

BW

John

[lauraa11en in reply to John_Mills]

That would be great. I live in pontypridd (just outside cardiff) so to South wales and southern england is even better! Thank you

[Zebra]

Hi Laura,

Are you on Facebook? I run a private group there for UK Behcet's patients and we have over 230 members. I myself live in Cambridge and was diagnosed four and a half years ago. We have a growing Welsh contingent and are an active and supportive group. I will gladly link you up. Maybe private message me a link to your profile or if you aren't on Facebook then I can link you with others another way. X

[Zebra]

Hi Laura,

Are you on Facebook? I run a private group there for UK Behcet's patients and we have over 230 members. I myself live in Cambridge and was diagnosed four and a half years ago. We have a growing Welsh contingent and are an active and supportive group. I will gladly link you up. Maybe private message me a link to your profile or if you aren't on Facebook then I can link you with others another way. X

[John_Mills Volunteer]

Hopefully someone will contact you very soon Laura

BW

John

[lovestocook]

hi laura , myu name is janine davies and i am 49 years old , had behcets for years but only diagnosed 20 months ago . I am having difficulty getting the correct treatment and have been fighting the aneuran bevan health board for 9 months to get a referal to a centre of excellence . I too found myself isolated but through facebook has been a lifeline, I live in tredegar , the valleys and my email address is [e-mail] , or you can add me on facebook if you think it would help , hope you are well and make contact when you are ready , best wishes Janine

[lauraa11en]

I'm from Manchester originally, I've been living here for 8 years and I cannot get over just how bad the healthcare system is here in Wales. Have you tried getting referred to UHW? I paid privately to see a consultant there but she immediately took me on in her NHS clinic and its the best invesment I've ever made! Are you on the 'secret' behcets group on facebook? If you are the janine davies on there I will add you as a friend x

[Tippon]

Hi Laura

I'm Ryan, from Aberdare. I've got Wegener's, and completely agree that the healthcare system in the valleys is useless. It's a different health board to Cardiff, and if I'd listened to their advice, I'd probably be dead now.

Just to check, have you found Vasculitis UK on Facebook yet? John, Susan and the team have got so much experience and knowledge between them, and the rest of us are pretty friendly (even when the pred is kicking in )

facebook.com/groups/1635100...