does anyone know where I can locate a sjorgens sy... - LUPUS UK
does anyone know where I can locate a sjorgens syndrome support group, or a website that may offer me some help.
Hi Marcia,
There is a support group on HealthUnlocked, though it is run by an Australian organisation - sjogrens-aus.healthunlocked...
The equivalent in Britain is the BSSA - bssa.uk.net/
I've not dealt with that the BSSA myself, but I'm sure they're very helpful.
There are a lot of people in this community that sjogren's too, so they may be able to help with any questions you might have.
Paul
LUPUS UK
Re above I was a member of the SS bssa.uk.net - they do have regional support groups doted around the country which meet up every couple of months. You will find these groups very informative as sometimes they have guess speakers from the medical prof to give sound advice and assistance. You can also pick up free samples to assist in allievating the SS symptoms. If i remember correctly the membership fee was £25.00 for the year and they post out to you every quarter their latest news letter.
You can also register online with them.
Hello Marcia
You could do a lot worse than to join Kooky Lupies on facebook.
You would be made very welcome.
Hi Marcia, there is a couple of Sjogrens syndrome groups on Face book there is the BSSA as mention by Lulubelle above that is a UK group and there is Living with Sjogrens syndrome which is an American site but both of them give good info and help from people who have Sjogrens. There are also people on the Lupus Facebook page that have Sjogrens too. The BSSA sends out a 1/4 news letter that is very interesting and always has a page of info about some aspect of Sjogrens that is written by a hospital consultant so is very useful. that is as Lulubelle says bssa.uk.net/ hope this helps
best wishes Cathy