Tag Archive: Mental Health

EDS – A Pain in the..…Everything

I’m Sonia, I’m 48 years old and recently diagnosed with hEDS. I recently had to resign from a job I loved. My story is a description of pain, in the hope that others who also haven’t found effective management can relate. It’s possible I began experiencing pain before I was old enough to remember or […]
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Dear Warriors…..

Life has this funny way of telling you things you can and can’t do, over and over again. As a child, we knew something was “off” with the way I acted, walked, and did other activities, but we weren’t quite yet at a stage where we could pin point what it was. As I began […]
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My pain management journey

Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, I […]
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How clEDS has changed me since diagnosis

Before I was diagnosed with EDS at the age of 37, I would have described myself as outgoing, friendly, brave, trusting and strong – but it wasn’t until now, 3-5 years after being officially diagnosed, that I consider I truly know what these words mean. I wanted to be resilient and courageous, pushing healthy boundaries […]
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One Society, A Home For All

Many around the world face a diagnostic odyssey: years, sometimes lifetimes, fighting for recognition, diagnosis, and care. The Ehlers-Danlos Society is working towards a time when geography and wealth no longer determine your quality of life. Education is needed to advance early diagnosis and intervention—and post-diagnosis, patients urgently need support and guidance. We want to […]
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The long road to diagnosing HSD

It has taken a long time for my family to be diagnosed with hypermobility spectrum disorder (HSD). We’ve been told different things by different geneticists, and we have symptoms that aren’t attributed to HSD. One of my brothers, my mother, and myself have also all been diagnosed with Hashimoto’s disease. It proves extremely difficult for […]
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If only people understood

I’m Spencer, I’m 16 years old, and I have hEDS. I wanted to share my story, because I know that there isn’t a lot of visibility for the men out there with EDS. My symptoms started when I was 6 years old. It started out as pain and instability in my ankles and knees, which was […]
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Managing my insecurities

My name is Rachel and I have classical EDS (cEDS). I’ve never been open to anyone about my insecurities about having EDS. I’ve told others that I have it, and explained what it is in a very objective way, but I never dwelt deeper than that. Searching ‘EDS’ in Instagram was shocking to find so […]
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THE QUIET SIDE OF EDS

My name is Jimmy and I’m currently a freshman in college studying management of information systems. When most people look at me, it’s hard to tell that I struggle with what could be classified as an “invisible disorder.” And yet, as I’ve since discovered, EDS and my associated conditions are all the more real and important.
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