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Ehlers Danlos Syndrome - Who is the best doctor to see?
Bones, Joints & Muscles | Last Active: Sep 7, 2025 | Replies (52)Comment receiving replies
Hi. Your case was denied because you have hEDS. I was denied being seen by U of Michigan Genetics, for the same reason. I was told to go to different specialists for each problem. It doesn't work that well. You could see if Cleveland Clinic or NY IT'S EDS Hypermobility Treatment Center could help. And there is good news that University of Virginia in Charlottesville, is opening a Comprehensive Program for Connective Tissue Disorders, at Fontaine Research Park. I believe early next year, 2026. I had to Google ALL the symptoms of hEDS myself to find out the link between infertility in women, chronic fatigue, breathing problems with exercise, heart valve deterioration that has been caused by my hEDS. Anyone with Hypermobility should go online and get more information, themselves. Forget your PCP ever diagnosing you.
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People with hEDS, are considered, " too common," and usually not in serious enough condition for the EDS specialists to see them when there is a long waiting list for the more rare types of EDS patients. I was also told that hEDS is much more common in females than males, BTW.