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Yesterday, a newly diagnosed Sjogren's patient posted a comment that I thought deserves a post all of it's own. Remember when you first realized that you had Sjogren's syndrome? And when you thought, "What the HECK is Sjs?" And when you wondered if this diagnosis meant that you should panic? Anonymous must be feeling the same way. Kate Stout left an excellent response, but what else would you add if you had a chance to sit down with anonymous over a cup of coffee? Here's her question:
Anonymous:Just found out I have Sjogrens. Bit of a shock - I'd never heard of it. I'm a 32 year old female........ My questions are a) Does anyone else with Sjogrens have associated ITP/platelet issues? And b) Generally do we all get by? I mean we might have day to day issues and flare ups occasionally but it's liveable right - having Sjogrens? You can still have a good, long, fun life? The more I Google it the more frightening it seems. Are there any groups I should join?
Kate Stout said: Anonymous - two excellent resources are the Sjogren's Foundation, http://sjogrens.org, and a very knowledgeable and friendly support group called Sjogren's World at http://sjogrensworld.org.
Everyone's path varies. Some people have "just" dry eyes and mouth, some have occasional fatigue, and some have a large number of troubling symptoms. There's no way to know what your path will be, and after the initial shock is over, you'll find a way to deal with whatever your particular details are.
Pour yourself a cuppa your favorite beverage, grab your phone or computer, and share your your valuable experiences and information that would be important to a Sjogren's newbie in the comment section below.