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Eosinophilic Fasciitis: Looking to connect with others

Autoimmune Diseases | Last Active: Jun 13 10:37am | Replies (37)
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@kkaping

Hi All,

I have recently been diagnosed with eosinophilic fasciitis (EF) here in Oregon. It's hard to find people (as there are not many of us) to discuss symptoms and treatments. I do sometimes feel very isolated. Stephg, I would be happy to connect to share my experience and hear more about your health journey with this unicorn disorder.

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Replies to "Hi All, I have recently been diagnosed with eosinophilic fasciitis (EF) here in Oregon. It's hard..."
edl75 | @edl75 | Jun 13 10:33am

There are so many weird eosinophil disorders. I have Gleich syndrome. My eosinophil count goes from lows of 1500 to highs of 25000 in a 30 day period. Causes edema, itching, severe body aching. Diagnosed in 2014. Took 1 yr to diagnose as no doctor , not even John Hopkins could figure it out. NIH determined what I had and I have been in a research program , 1 of less than a dozen people worldwide diagnosed and in their program. I just take 4 mg of prednisone daily for 4 days and it quickly eliminates my symptoms. You ma want to contact NIH they have a complete research dept on eosinophil disorders. Good luck. Crazy , when doctors see my eosinophil numbers they all say they have never heard of Gleich

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