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Old 12-19-2011, 11:07 AM   #2
luca689 luca689 is offline
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Re: sjogrens syndrome/very frightened.

Welcome to the rare disease club. There are certainly treatments for Sjogren's now, even if there is no cure. I have secondary Sjogren's to CREST, a form of scleroderma, and understand your fear. But these diseases can be managed so much better than in the past. LOL, on another place on the internet there is a lady who is 80 years young with scleroderma! I think we all go through that fear stage in the beginning, but as you go forward with your treatments it gets easier to handle. I might also mention that most of the time, when you do research on these rare conditions, you only get the worst case scenarios, to make everything even scarier. AI diseases are notoriously difficult to diagnose, and getting a name to your particular disease, if you've not got positive blood work to point to any one direction can take years, and doesn't seem to be that uncommon. I'm just a patient, but there are many treatment options besides steroids nowadays. I guess that's why they call it medical "arts". I guess I wanna say, cheer up and enjoy your daughter and the holidays! AI diseases such as Sjogren's are not automatically death or even disability sentences any more! Take care and let us know how you're doing!

 
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