Tag Archive: skin

Growing up with cEDS

I am a 21-year-old female. I was diagnosed with Ehlers-Danlos syndrome (EDS) when I was 6 months old. My father has EDS as well, and he noticed when I fell off a couch that I had a cut shaped as a triangle or as I call them “smiley faces”. He automatically knew what I had
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genevieve is taking a selfie, while holding an IV pole

My lightbulb moment

The first sign that something was wrong was my ankles. Anyone walking behind me could see that my feet wobbled as I walked. As a kid, I didn’t realize this was wrong, and I thought that everyone’s feet hurt after walking for 15 minutes. I went to the doctor, and they told me to get
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yasmine smiling at the camera with her knee up

The important things lie in the imperfections

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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Moira's challenge with cEDS

My mother became a nurse to learn wound care

I was diagnosed with EDS at four years old after being admitted to the hospital with my ‘healthy as an ox’ brother with suspected child abuse. 2 weeks later I was discharged with a diagnosis of classical Ehlers-Danlos syndrome (cEDS), and next to no information. My mother (no history or diagnosis) then studied to become
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Managing my insecurities

My name is Rachel and I have classical EDS (cEDS). I’ve never been open to anyone about my insecurities about having EDS. I’ve told others that I have it, and explained what it is in a very objective way, but I never dwelt deeper than that. Searching ‘EDS’ in Instagram was shocking to find so
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Learning how to adapt to life with cEDS

By Liz H. My daughter, Frances, was diagnosed with cEDS when she was almost 2 years old. We feel lucky that we were able to obtain a diagnosis so young, knowing that many EDS patients spend much of their lives trying to figure it out. It’s possible that we also would have been in the
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