Published: 27/04/2021

I hope that someday there will be help for EDS

It was a 50/50 chance if I would have EDS when I was born. Unfortunately, I was born prematurely at 3lb 4oz.

I have been struggling for 18 years. I am in constant pain every day and nothing can be done to fix it. It makes me miserable and I feel weak when I can’t do certain activities.

Growing up in school was difficult because I had to be more careful than other kids. I couldn’t play sports and do most other activities because it was painful or I’d get bruises the size of eggs. Kids would always ask why my skin was so stretchy and where all my bruises were from. I honestly didn’t know what to say.

I’ve had plenty of hospital visits where the doctors/nurses have never even heard of my disorder and it’s somewhat irritating. I just recently had two bunionectomies because the joints in my feet were so bad. EDS caused my feet to turn out and form bunions around middle school. It continued to get worse and at one point I couldn’t even stand for more than 3 hours because the pain was so bad. My back was thrown off, I couldn’t work and I could never wear regular shoes. It came down to getting surgery and at that stage of the game, I didn’t care. I just wanted the pain to stop.

After the first and second surgery, the healing process was excruciating. The pain was all in my ankles and not in my feet where they performed the surgery. Even now as I walk and continue Physical Therapy my ankles always hurt and tend to roll out and pop. I feel like it’s one thing after another with this disorder. I feel like it really holds me back and it affects me every day.

If I ever can have children one day I do not want them to suffer the pain that I am always in, and I don’t want to always worry more about them because they’d be more prone to injuries. I believe I have hypermobile EDS but I have never actually gotten a test for what kind I have. Some other things I believe are caused by EDS that I have are popping and locking in the jaw, many food allergies, hypermobile joints, heart palpitations, and acid reflux. I hope someday that there will be something to help with EDS and that I can figure out if I just have hypermobile EDS or another kind.

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