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Ehlers-Danlos Syndrome: What I’ve Learned


At the beginning of 2016, I was miserable. My family was on vacation in Colorado so that we could ski, something we’ve been doing since I was little. The second day we were skiing I fell and landed on my hip and the pain was unimaginable. I didn’t ski for the rest of the time we were in Colorado. Once I got over the initial pain of the fall, which only lasted a few days, I came down with an upper respiratory infection, because my body was so focused on the pain that it ignored my immune system.

This is a pattern that has been repeating itself since I was in the fourth grade. This year the pain became worse than it ever was before. I was out of school for countless days. I averaged two hours of sleep at night because the pain kept me up. I was falling asleep in class and having panic attacks at the thought of going into the crowded hallway. I was so afraid that I’d be bumped into. In short, I wasn’t really living. Because of this, I was recommended to enter the Functional Independence Restoration (FIRST) an inpatient program for chronic pain rehabilitation.

I have a condition called Ehlers-Danlos Syndrome (EDS), hypermobility type, a genetic disorder that affects connective tissue that I never truly understood until I came to the FIRST program.