Tag Archive: Support System

My EDS diagnosis was questioned because of my weight

“Wait, you can’t have Ehlers-Danlos syndrome… can you?” So, luckily for us EDSers, medical professionals out there are slowly (oh so slowly) starting to recognize the struggle we have with this chronic, genetic, faulty collagen, pain-fuelled condition. Many don’t understand it, some even deny its very existence, but a few have embraced the need for […]
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I bought a second home to be nearer to doctors who understood

The first time I went to a doctor to try to determine what was causing my pain and fatigue, I was 14. The doctor identified my mitral valve prolapse but, other than that, he deemed me to have been perfectly healthy. I didn’t aggressively pursue a diagnosis, I just knew my neck and back hurt […]
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Having someone who understands every unstable step

My mother and I were diagnosed in tandem. My mother was 39 but looked 19, living a life in chronic pain with constant joint instability. I was 6, and sitting in the doctors office in a W banding my fingers backwards so my hand looked like a skydiver. In the 23 years that have followed […]
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I’m thankful for my early diagnosis

My name is Reavie and I am 16 months old. My mom and dad had never heard of EDS before they had me, although it turns out my mom has it too. We knew something was up when at 6 months, before I was crawling or even rolling around, my arms were covered in bruises. […]
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SYMPATHY, ACCEPTANCE, & HOPE

Thanks to a great community of other Zebras sharing their experiences and talking to me about my worries the hopelessness has been getting much better. They can’t fix me but at least they help me look on the bright side and make me feel like I am not alone.
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