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What it Was Like to Grow Up With Ehlers-Danlos Syndrome

key information

source: The Mighty

year: 2016

authors: Bethany Faith Harrup


When I was 6 years old I fell off my bike, and I cried so much that my dad had to carry me inside. For the next few days, I walked around with a bruise on my side that was as dark purple as my bed sheets, and I remember wondering if it was normal for the bones in my chest to hurt when I breathed.

When I was 7 years old I was watching TV when my neck cracked and froze itself that way. I couldn’t move my head for a couple of days, so my mom took me to the doctor, and he pulled my neck away from my shoulders while my parents held my arms and legs down, and I cried because it hurt so bad, but I felt my neck pop again and then I could move. The doctor said, “That’s unusual,” but never did anything about it.

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