By Hallie W. Hi everyone, I’m Hallie. I am 18 years old, and received my hypermobility Ehlers-Danlos diagnosis last year, at 17. As I’m sure most of you know, the feelings regarding an Ehlers-Danlos diagnosis come in phases. I felt the extreme relief at having an answer, and verifying my sanity. I felt the “I
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By Emma S. I was in 8th grade when I first noticed that my pain—my body—is different. During after-school dance, I was coming out of a handstand and my foot got caught in my pant leg. I fell on my chest. Everyone came over to ask me if I was OK. I said, “It’s only
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I have dedicated my life to EDS awareness, educating doctors and medical personnel at every turn about EDS and vEDS. We must stop that phone call in the middle of the night.
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I find strength in my diagnosis, knowing that other people struggle with the same things I do every day, but I can do it with half the energy and twice the pain.
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I am a much different doctor now – honestly, I thought I was good before EDS – but I understand the fear and helplessness of having doctors look at you like “it’s all in your head”.
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Over the past five months, I have powered through the pain. I have continued to make the most out of my abilities. Just three weeks ago I had the surgery to remove my broken hardware. I am excited to no longer be known in my school as “the girl with the broken back.” I know that I am resilient, that I am capable of anything I imagine myself to be.
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