EDS is only one part of me, but it controls my daily life

Posted March 25, 2021

Jessica sits on a chair with legs crossed. She wears zebra print on her legs.

My name is Jessica, I am 16 years old. I was diagnosed with Ehlers-Danlos syndrome (EDS) in Columbus, Ohio, at the age of 15 after years of injuries: some with no trauma involved.

My first shoulder dislocation happened simply by me sitting up in the car while on a long trip. Once in my teens, the disease came at me with vengeful force. Subluxations soon became full dislocations. Pain filled my joints like helium from a balloon. School was becoming difficult as one joint after another seemed as though it was falling apart. Symptom after symptom approached and all I could do was hang on for the ride.

Soon I began struggling in everyday tasks due to frequent dislocations. Ever try and put your shoe on and tie it with only one arm? Buy slip-on shoes, you say….when I walked over to put them on, out went the hip. Washing very long hair with neither shoulder joint in place? It’s not an easy task.

The constant pain in my hips, lower back, and shoulders sent me to The Comprehensive Pain Clinic at Nationwide. I have an as-needed appointment with Orthopedics because of my frequent injuries. When I run into my doctors anywhere, they call me by name. I see them more than my family.

I have a collection of braces for just about every joint you could think of. As a teen, I’d much rather collect CDs or anything other than my pile of orthopedic braces and handicap placards. My fingers dislocate daily. It’s impossible to write my name without a finger joint popping out of place. My ribs pop in and out when I breathe deep, cough, with certain movements, or even when I laugh.

My left shoulder dislocated 27 times before I had surgery to tighten the connective tissue. My right shoulder has dislocated so many times I lost count. I have surgery scheduled for it in a few weeks. This is out of the ordinary as surgery is usually the last option and most of the time doesn’t work for many EDS patients but I could no longer pick up a school book, wash my own hair or even function with it fully dislocated on a daily basis. Finally, the surgeon said regardless of the EDS at this point, we have to treat the injury. I tore the meniscus in my knee by simply walking which required surgery as well.

My hips, elbows. ankles and knee caps either sublux or dislocate very frequently. I have stomach dysfunction and chronic pain. Not many people understand the amount of pain an EDS patient can be in at any given time but I have excellent doctors and a physical therapy team that truly listens and understand.

I love Karate, photography, drawing, being with friends, and listening to music just like any other teen. My disease is only a part of who I am but it controls my daily life and the things that I am able to do. Most people I know are not familiar with Ehlers-Danlos syndrome and don’t fully understand why my body does what it does. My parents and sisters along with a few friends and classmates have been so supportive and are my biggest fans. I’m lucky enough to attend a very small school with a wonderful staff who have been there, understood, and helped me succeed, regardless of my needs. I’m a very rare patient as I have Hypokalemic Periodic Paralysis as well. I often joke that when I decided to be rare, one rare disease wasn’t enough but that’s a whole other story!

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