Patient Comments: Ehlers-Danlos Syndrome - Share Your Experience

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

Comment from: Late Diagnosis, Female (Patient) Published: July 24

I was diagnosed with Ehlers-Danlos a little over 2 years ago. I had never heard the name before. Doctors passed around the term Marfan when I was 12 when I first dislocated my knee. Since then, I have dislocated my knee several more times and have had two surgeries. The first resulted in my patella dislocating in the opposite direction. After the second, I have been fortunate not to have any more but have severe pain. I have subluxed my shoulder, dislocated my thumb, and sprained my ankles in both directions more times than I can count. Being diagnosed with Ehlers-Danlos syndrome was sort of a relief for me. I always felt there had to be a reason I was different. Why was I in pain all the time and having so many injuries? I felt I was crazy. I also have a bicuspid heart valve and have had scares with dilatations. Very recently, a relative of mine who is only 5 years old was diagnosed with EDS. I was sad to hear about it, but I hope her early diagnosis helps her in many ways.

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Comment from: Nurse, 13-18 Female (Caregiver) Published: June 24

I have been a nurse in pediatric units of a large mid-west hospital for 15 years. We see EDS (Ehlers-Danlos syndrome) patients rarely because they are handled mostly on outpatient services. One of the continuing problems has always been pain management which I note is the issue with adults as well. The other issue we see is mobility problems affecting getting around at school. The best predictor of success seems to be parental involvement and the kid's personality; the more upbeat the kid, the better they do.

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Comment from: hboots68, 13-18 Female (Caregiver) Published: March 27

My 16 year old daughter went to a pain specialist the other day, and he said that she probably has Ehlers-Danlos syndrome (EDS). He has requested a referral to the children's hospital to see a specialist, but that will take at least 6 months or more. She was told that she has fibromyalgia and hypermobile joints when she was 12. She has fibromyalgia and now we believe she also has EDS. This makes it hard to treat since what is good for one is not good for the other. They changed some of her medications and gave her tramadol for the pain. Hopefully we can get this under control so that she can live a semi-normal life.

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Comment from: Mowy, 75 or over Female (Patient) Published: December 16

I have had Ehlers forever. They have my shoulder tied into my shoulder bone. My veins pop. I have always had a problem going up and down stairs. Now my intestines are popping out. I have passed this on to my children.

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Comment from: Metoaka, 35-44 Female (Patient) Published: October 15

I was diagnosed 4 years ago with Ehlers-Danlos syndrome (hypermobility) after a lifelong struggle with this disorder. I wasn't diagnosed until after I had my 6 children (two of whom I lost). Now, three of my four surviving children also have this disorder.

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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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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 - Experience Question: What lifestyle changes have you experienced that has helped symptoms of Ehlers-Danlos syndrome?

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