Patient Comments: Ehlers-Danlos Syndrome - Share Your Experience

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

Comment from: Teacher5, 55-64 Female (Patient) Published: May 13

When I was a crawling toddler, my legs would bruise very easily. My mom suspected something was different between me and my siblings so she pushed for a diagnosis - Ehlers-Danlos syndrome (EDS). Oddly, my father had some of my same issues, but he never paid it any mind. Whenever we went on vacation, I would end up with stitches or a huge lump wherever I had bumped myself. My skin stretches incredibly, but it"s never been a problem. I have had more cavities than any of my siblings despite trying to take good care of my teeth. My 2 sons have also had their share of stitches. Also, when they each turned 18, even though neither had had any cavities that could be seen by their pediatric dentist, their new dentist diagnosed them with deep cavities, necessitating root canals. Then, their pediatric dentist did a lot of research and called to ask if they had EDS. I was shocked, to say the least. Watch your teeth!

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Comment from: MomWithEDS, 25-34 Female (Patient) Published: November 18

I am a 32 year old mother of two who was diagnosed by with Ehlers-Danlos syndrome (EDS) in May 2013. As a child and teenager it was always thought that I was just very flexible and double-jointed. A few years ago my hips started popping out without warning, and it was extremely painful. After visiting a local orthopedist, she suspected that EDS Hypermobility Type 3 may be my issue. She referred me to another doctor for an official work-up and diagnosis. He was certain I had EDS within minutes of starting the exam. Currently I am doing physical therapy to strengthen my core (hopefully to make my muscles be able to make my joints more stable), but I haven't had any improvement so far that I can tell. Medication wise I take an extended release medicine (Oxycontin) three times a day, along with an anti-inflammatory and another pain medicine (oxycodone IR) for breakthrough pain. This is not the life I had imagined I'd have, but I try to stay positive in the face of pain and accept my situation without letting it own me.

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

I have had symptoms of Ehlers-Danlos syndrome my whole life. For the longest time my mom was told it was growing pains, but the first sign was actually my knee cap dislocating. It did that for years and was very painful. I have dislocated my elbow, knee and both thumbs. I sprain very easily but have never broken a bone. I fall, trip, bump into things and bruise easily. My pain has gotten worse as I have gotten older. The pinnacle so far was my back surgery in 2012. I now have fibromyalgia as well. I was told people with chronic pain often get this. It was hard to find a doctor who believed me and I actually started to doubt myself thinking, maybe it really is in my head. Thankfully I found a doctor who diagnosed me in minutes with Ehlers-Danlos, hypermobility type. As painful as it is, it is such a relief to know it is a real thing and not in my head. I now use a walker to get around and have found a doctor that is trying to help me.

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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: 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: 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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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, and has Ehlers-Danlos syndrome.
Ehlers-Danlos Syndrome - Treatments Question: What treatments or lifestyle changes have experienced that has helped symptoms of Ehlers-Danlos syndrome?

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