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By Zoey B.
I’m the girl who’s always broken.
Some kids actually don’t know my name. I’m just referred to as the girl who’s always broken. I mean, for them it probably seems like it.
My whole life I was always very flexible, doing weird things with my body other kids couldn’t do. Although this came in very handy as a baton twirler, it wasn’t thought to be abnormal or in any way harmful to me—until I entered the eighth grade. On my first day of band camp, as I was finally old enough to be a majorette for our high school marching band, I was rehearsing and felt a large movement in my knee, I fell to the ground, unable to get up. After seeing the orthopedist we discovered my knee had dislocated.
Months of physical therapy and I was finally back on my feet, returning to sports. My first baton practice back without my brace I did I high kick, resulting in a knee cap dislocation so loud everyone heard it. From there my doctor said I needed surgery, I couldn’t walk without dislocating it. After that surgery I had three more, having my leg broken twice to try and fix the tracking. Four surgeries and nothing could fix me.
My sophomore year of high school I was bedridden for two weeks, unable to do anything without pain in my shoulders and neck. I couldn’t take it anymore. On top of that I was diagnosed with dysautonomia, I was falling apart at the seems. None of the treatments seemed to work, I just couldn’t get better.
One day I was looking online and saw something about EDS. As I never heard about it before, I started looking to see what it was. I remember after reading, thinking, here is my answer, this is what I’ve been looking for! After talking to my orthopedist I was quickly sent to genetics where I was confirmed with hypermobile EDS. Finally my answer has been found. My weirdness finally has a name.
I’m not just the girl who’s always broken. My name is Zoey, and I am an EDS warrior.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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