Published: 07/03/2022

hEDS is a rollercoaster ride

I am Emma, a zebra here to tell my story.

I was adopted from China and that is where my journey begins. The doctors here in the United States didn’t think I would be able to walk, run, or stand. When I was younger, I was in physical therapy and occupational therapy 3-4 times per week. I became stronger but a lot of issues still stayed with me. For one, I have low muscle tone in my hand. ⁠

I was and still am always active. I used to dance, ski, horseback ride, gymnastics, soccer, you name it and I have probably tried that sport/activity. I have always been hypermobile and flexible. Other people would call me “Gumby” but I never thought of my flexibility being an issue. I thought that I would grow out of it as I aged but nope that didn’t happen! ⁠

Fast forward to 2017 when I was diagnosed with hypermobile EDS (hEDS) by my knee surgeon. EDS has caused me to have three knee surgeries, two shoulder surgeries, and many restless, painful nights. I ended up being diagnosed with bilateral hip dysplasia with two labral tears and a cyst. I am constantly struggling with my pain as I adapted to my body and made it the norm to be in pain. ⁠

Not being active has taken a toll on me mentally and physically. I also learned that my metabolism is a lot slower than where it should be and it is harder for me to lose weight. I have had a rollercoaster ride with my hEDS and it is very frustrating that there is no solution to help with pain or be told that “it’s all in your head” or that “you’re too young to be in pain.”

Having hEDS has also made me struggle with my mental health. I horseback ride, ski, and dance when I can. I am pursuing Nursing but not sure if that’s where I will end up. I want to thank my family, boyfriend, friends, and doctors for supporting me and helping me get through the painful times.

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