Patient Comments: Ehlers-Danlos Syndrome - Share Your Experience

Do you or a relative have Ehlers-Danlos syndrome (hypermobility)? Please share your experience.

Comment from: VisualEyez, 19-24 Female (Patient) Published: July 26

Daughter was just diagnosed with EDS - benign version. We had never heard of this before and didn't even know the questions to ask. She is 22. She is very flexible, scars easily, and has history of joint pain. We have read about issues with gastrointestinal problems which has landed her in the emergency room a few times without explanation and exploratory surgery for possible ovarian cyst rupture. She has issues with anesthesia (has woken up during procedures). There is family history of aortic aneurysms. I'm just concerned that some how these are all involved but are being overlooked. We are doing our best to find someone in the area that is more familiar with this syndrome.

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Comment from: virgo40, 45-54 Female (Caregiver) Published: May 31

I have a sister who has Ehlers-Danlo and it is heart breaking. She has so many scars from falling as a child. It is anxiety-producing whenever she has to have surgery. We always have concerns about sutures/staples holding etc. She just had knee surgery for a torn patella tendon. We're all very worried.

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Comment from: MomofThree, 19-24 Male (Caregiver) Published: May 31

My son was just diagnosed with EDS III. We live in Chicago and are desperate to find a physician who can treat him.

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Comment from: siboydzz, 45-54 Female (Patient) Published: April 09

Since I was a teenager I've had dislocated joints. Even during pregnancy they were dislocated. I always told my physicians about my hypermobility, but no one seemed to be listening. When I started to have bleeding in the knee joints, I saw hematologists, knee surgeons, and they were clueless. Only a rheumatologist knew that I had EDS. I was wrongly diagnosed with scleroderma before. I have pain daily. But nobody can see it.

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Patient Comments

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Ehlers-Danlos Syndrome - Treatments Question: How was your Ehlers-Danlos syndrome treated?
Ehlers-Danlos Syndrome - Diagnosis Question: How was your Ehlers-Danlos syndrome diagnosed?

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