Ehlers Danlos Syndrome - Who is the best doctor to see?

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.

Thank you so much for your reply. I’m sorry that you had to go through so much before your diagnosis. I wish we could go to Florida, but right now we have an upcoming appointment in Minnesota which I think will be a good start for us. My daughter also does have problems with digestion although I don’t really know the connection yet I should read more about that part. I suppose they just treated as they would any constipation? I can relate to your Frustration with the doctors prior to diagnosis. Our children’s doctor simply looked at us and told us that he she thought that my daughter had a low pain threshold. I immediately stopped going to her. I began taking her to children’s hospital and it was only when I was seeing a physical therapist myself and was asking her about it that she brought up the EDS diagnosis. Honestly I’m not even sure children’s would have caught it because they haven’t so far and we’re sending us at that point to the pain clinic to be treated for pain. I wish more doctors were educated about this condition.