British Sjogren's Syndrome Association

[Sarah Aish]

Hi

This is a question for the brits really. 

Being recently diagnosed, I'm considering joining the BSSA.  Primarily as they are holding an all day forum in September in London to which members can attend.  Thought it would be beneficial to hear professionals speak on the subject and meet other sufferers. 

Are any of you members and have you been to one of of these annual forums?  It costs ?25 a year and just wanted your opinions as to whether it was worth joining.

Many thanks
Sarah

[Katybarstool]

Sarah

I joined to go to the Birmingham conference last year, and it was worth the money, if only for that. I'm hoping to go to the London conference in the autumn. Hubby plans to come with me, and we will take in a show and stay over. Would be fab to meet up.

I haven't had any other contact with the group, but I must say, two leaflets they gave me in the conference pack last year have been a Godsend the last twice I have been in hospital, as non of the nurses knew what SJS was. They are a bit tatty now, but will be going in my hosptal bag when I go for my surgery tomorrow.

Kathyx

[Tryfan]

Hi, I've just been in contact with the BSSA and intend to join (recent diagnosis!).  They sent me an information pack which included a booklet for medical practitioners (could prove handy).  I'm not sure I'll be able to go to the September conference though.  I was told I should get in touch with them by my Rheumatologist.  There is a helpline you can call but you can't speak to someone straight away.  They call you back and unfortunately, I was up to my eyes in children when they did so but we did arrange to chat again.  They all seem very supportive.  Also,  I think they send newsletters regularly if you join and it would certainly be good to keep up to date with what's happening in Sjogren UK!