Denial: A tiger in a zebra’s body. “Have you in the last three months installed a shower rail?” I said, “No, but does a 6ft male count?” The nurse chuckled and said, “I’m being serious”, to which I said, “So am I”. From the outside looking in, I am a 43-year-old British woman living the life in Queensland,
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I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) when I was 14 years old. As a child, my mother took me to the ER for dislocated shoulders so often that the doctors thought I was being abused. It wasn’t until my knees started dislocating as a teen that I was given an official diagnosis. I
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One evening in 2007, I was on the computer at my home in Arlington, Virginia, browsing articles on CNN’s website when a headline caught my eye about a children’s band called The Wiggles. It said that a founding member had to quit performing due to a rare medical condition. It went on to describe his
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The rush of feelings like bubbles during the first pour of champagne. My heart beating as though I am running the NYC marathon (a dream that will always remain a dream). Still very unsure which letters to use as I am perplexed on what words to even begin with. Never have I felt so vulnerable
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My life has been nothing short of exhausting. There’s nothing like a life interrupted to gain perspective. Having grown up with a brother who suffers from quadriplegia and profound retardation as a result of Cerebral Palsy and severe intellectual impairment, I became grounded very young and was raised to never take anything for granted. However;
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My wife, Molly was diagnosed over twenty years ago with hypermobile EDS (hEDS). For years, we have dealt with many challenges EDS has brought. For most of those years, we have been able to live a pretty normal life, albeit with limitations and strong medications. We have owned and rode horses for most of our
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CW: Contains discussion of miscarriage and suicide I have always been a planner. I knew at a young age that I wanted to be a dietitian and fulfilled this goal through hard work and dedication. I married my first love and I was the first of my friends to marry and the first to have
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My name is Julia Brouwers, I’m turning 24 soon, and I live in a small city close to Amsterdam in The Netherlands. I am trying to create more awareness for people with disabilities. I recently wrote a small post about having a disability in the business world and unexpectedly it has been viewed over 1.38
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My name is Pashondra James, I am 45 years old and from NC. I am the mother to two beautiful angels, Myecia Abri and Aric Isaiah James who passed away at birth due to EDS related complications. I did not know until 2011 that I was fighting a genetic illness called hypermobile Ehlers-Danlos syndrome (hEDS).
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TW: Contains discussion of drug and alcohol misuse My hypermobile Ehlers-Danlos syndrome (hEDS) story starts from my birth, inherited from my mother, but we didn’t know until six years ago when I was finally diagnosed. My mother expected as much, being diagnosed around a decade ago. Growing up we faced our fair share of hardships.
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