Growing up with cEDSPosted February 12, 2021
I am 21-years-old, and I was diagnosed with Ehlers-Danlos syndrome (EDS) when I was six 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. I was diagnosed with classical Ehlers-Danlos syndrome (cEDS).
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. 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 want to be an activist for my disorder. I want to tell anyone and everyone what I have just to bring light to it.Tags: advocacy, cEDS, hypermobility, skin
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