Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
I'm looking for a doctor in oregon for my friend to help with diagnoses of classic EDS. Should I be looking for a rheumatotlogist?
deleted_user
You really need a specialist in hypermobility but the rhumy could refer your friend.
deleted_user
Hmmm...don't know about Oregon but there is a geneticist in Seattle. My sis was recently diagnosed and her rheumatologist referred her to this guy in Seattle.
deleted_user
My sister went to OHSU in Portland and she goes to Dr Devohny (sp?) There are two of them at OHSU and the wife is actually a specialist in ED. They have worked with my sister for almost 10 years now and have worked wonders on her. I would highly suggest either the husband or the wife.
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