Patient Comments: Ehlers-Danlos Syndrome - Share Your Experience

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

Comment from: frustrated mom, 25-34 Female (Caregiver) Published: August 05

My daughter has suffered with EDS diagnosed 4 years ago, prior to formal diagnosis she had symptoms for years. She is 28 and has 24 surgeries. Mostly shoulder, jaw and knees. Now her hip dislocates, she has been to the ED several times given an ice pack and is labeled a pain med seeker. She is very depressed.

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Comment from: BrittanyMarie, 13-18 Female (Patient) Published: July 29

I was diagnosed when I was 11 With the hyper mobility type. I started having real troubles maybe a year later. My dad also has the hyper mobility type so little to say I got it from him. I have a hard time getting up in the mornings and have a lot of body pain. When I was 11 it was causing my body to only lock up from my shoulders to my torso but then bu the time I was 15 my whole body I mean WHOLE body was locking up. It really hurts to move sometimes. Working out is almost impossible due to the pain I have to endure. I have a loose shoulder that's only getting worse and I also have a horrible knee problem, my cartilage has been worn down due to me trying to work out. I didn't listen to my doctor either about the weight. If you have any kind of EDS, keep the fat off, I am now struggling to get it all off. If you don't you'll be in a lot of pain like I am. We are planning surgery hopefully for my shoulder and the hopefully for my hands because my glove is loose. I have also been told by MANY doctors that if you have EDS put off getting surgery as long as you can. The fixes are never permanent they are only temporary. But as soon as they fix something you will never be the same. Your skin will take longer to heal so put it off as long as you can.

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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?
Ehlers-Danlos Syndrome - Symptoms Question: What symptoms have you or someone you know experienced with Ehlers-Danlos syndrome?
Ehlers-Danlos Syndrome - Treatments Question: What treatments or lifestyle changes have you experienced that has helped symptoms of Ehlers-Danlos syndrome?

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