Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
http://www.livingwithdryness.com/
general information on dryness symptoms and Sjgrens syndrome
a checklist of symptoms to look at and discuss with your doctor
tips on how to manage your dryness symptoms
a guide for how to talk to your doctor about your symptoms and how to get the most out of a visit
a glossary of terms related to dryness and dryness symptoms
information about treatment options
Dry mouth and dry eye can lead to much more serious conditions so its important you
talk to your doctor if youre experiencing these symptoms.
Additionally, the Sjgrens Syndrome Foundation (SSF) recently sponsored a survey of Sjgrens syndrome patients which shows some interesting statistics. Find a summary of the survey results online.
Did you know...
more than 80 percent of dry-mouth sufferers did not realize that their symptoms can be related to such a serious condition?
nearly 75 percent of dry-mouth sufferers feel like few people understand their condition?
almost 60 percent felt that others thought their symptoms were imagined?
one in six sufferers said that they discussed their symptoms with five or more healthcare providers leading up to their diagnosis?
almost half of sufferers reported that they were experiencing symptoms for three or more years before they were diagnosed?
I actually find the three year wait encouraging. When I was diagnosed, the average wait time was 8 years.
Just wanted to weigh in on other great support sites:
www.sjogrens.org (The SSF website--- your membership is tax deductible as a medical expense, and they have regional meetings several times a year and a national convention once a year, alternating from the East to the West coast. Members can access the last three years of their monthly magazine which is a great resource or buy helpful books on Sjogren's topics as a discount.)
www.dry.org (several e-support groups; SS-L is a more scientific oriented list and TalkSjo is a chat list of Sjogren's patients)
Yahoogroups has several Sjogren's e-lists as well.
CJ
Yeah, that means the word is getting out. It used to be , at one time, a ten yr diagnosis wait. So this is all good.....but remember the internet plays a monster role. As does many of the social networking sites.
I love to learn about new treatments and new ideas not so much the technical doctor jargon that flies over most peoples heads. Just love laymens terms...keep it simple.
I start reading doctor speak I get to sleep faster....better than counting sheep. :-)