CW: Contains discussion of self-harm Growing up I felt unique and different; I used to always freak out my friends by hyperextending my elbows and thumbs. I had no idea what Ehlers-Danlos syndrome was, nor did I know how it was going to affect my life in the future. I went to college at Christ
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I didn’t know I had hypermobile Ehlers-Danlos syndrome (hEDS) until age 26. I was born with congenital cardiac defects, and as a child everyone called me “double-jointed.” I was a very sports-involved tomboy covered in bruises, ace bandages, and casts, and suffered dislocations, ligament and tendon tears, sprains, and strains. I was always fainting with
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I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) at birth; my mother had it and when her water broke a month and a half early, it was confirmed that I had it too. As long as I can remember I’ve been in and out of hospitals with some new injury or joint issues. Each year
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My name is Julia Brouwers, I’m turning 24 soon, and I live in a small city close to Amsterdam in The Netherlands. I am trying to create more awareness for people with disabilities. I recently wrote a small post about having a disability in the business world and unexpectedly it has been viewed over 1.38
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It took 35 years. I did not learn I had classical Ehlers-Danlos syndrome (cEDS) until about 3 years ago at the age of 35, despite that my symptoms have been present my entire life. My mother started taking me to the doctor when I was four, she was concerned because I was not growing or
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TW: Contains discussion of suicide. I’m Charlotte, I’m 23 and I was diagnosed with joint hypermobility syndrome, IBS, chronic reflux, costochondritis, vitamin B12 deficiency, and possible pernicious anemia. I was originally diagnosed with ‘probable fibromyalgia’ when I was 16 years old. At the time I was told ‘you will probably grow out of it’ and
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I was diagnosed at 42 but all the signs were there from the start. As a child, I would sit in the ‘W’ position, I would often stand with my feet completely flexed so all the weight was on the outside ankles, I could do splits both ways and I got very tired walking. In
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For my whole life I struggled with building strength, keeping up with peers, and not understanding why movements look so different when I do them compared to others. As an adult, I now know what Ehlers-Danlos syndrome is: suddenly everything makes sense and the questions have been answered. When it came to my muscles, they
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By Zoey B. I’m the girl who’s always broken. For real. Some kids actually don’t know my name. I’m just referred to as the girl who’s always broken. I mean, for them it probably seems like it. My whole life I was always very flexible, doing weird things with my body other kids couldn’t do.
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I had to apply the same determination and perseverance that lead me to accomplish so much, well ahead of my peers, to my medical care, while fighting for an explanation for my life-altering and debilitating symptoms.
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