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I'm 38 years old woman. I have been diagnosed with CREST syndrome recently. I also have several other autoimmune diseases including Sjogrens syndrome and Raynaud. I have a lot of pain in my neck, hands, and joints. They're sometimes so bad that I have a hard time just holding my head up. I have problems swallowing, and sometimes I experience breathing difficulties. At times, I have to stay in bed for couple of days. I've been looking for more information about this disease and I found out that it may be fatal. I'm really scared. I couldn't find any relevant discussion boards that could offer more information about this. I hope I'll have better luck here. Could you tell me more about this disease and what to expect in the future? Is CREST syndrome really fatal? My doctor told me that Primary pulmonary hypertension is the most common fatal complication of CREST syndrome, but it's rare. 

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Hi Guest,

CREST or limited scleroderma is not always fatal.  You may/may not have all the complications. 

But, your doctor is correct.  20-30% of patients experience pumonary hypertension and/or lung problems.  Untreated they can be fatal.

Here are two links that may be of help:

http://www.mayoclinic.com/health/crest-syndrome/DS00580

http://my.clevelandclinic.org/disorders/scleroderma/hic_scleroderma_an_overview.aspx

Copy and paste them into your browser.  I couldn't get the hyperlinks to work.

Good luck.  Hope it helps.

 

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Hi medic dan. Thank you so much for the information and links. I hope I'm not in those 20-30% of patients. :(
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