Growing up with cEDS

Posted February 12, 2021

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 because he experiences the same wounds. If you haven’t guessed which type of EDS I was diagnosed with, it’s the classical type (cEDS). The one that cuts and bruises easily. 

That made growing up extremely difficult. I have scars covering my body from head to toe. When I was a toddler learning to walk, my mom told me that was the worst time because I’d be in and out of the hospital so much. I got used to the hospital. It was almost like it was my second home. I knew all of the doctors who would stitch me up. Sometimes I even watched because it was so fascinating to me. I told them I wanted to be like them and help people who have the same disorder. 

My joints dislocate and I’m very flexible. I show people my party tricks because it shows people that I have this disorder. I want to be an activist for my disorder. I want to tell anyone and everyone what I have just to bring light to it.

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