Tag Archive: hEDS

Our voices need to be heard

Ever since I could remember, I have had to endure random and unexplainable injuries, body discomfort, and health complications, often what doctors brushed off as “growing pains” my entire life. It started with virtually harmless occurrences, like being able to do weird “party tricks” for my family with my double-jointed ligaments or always being in
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Kayla smiles at the camera

My invisible illness

After twelve years, I have finally received the answer I’ve so desperately been searching for. My name is Kayla, I am 19 years old and I have hypermobile Ehlers-Danlos syndrome. For most of my life, I have pushed through lots of widespread joint pain and inflammation while thinking this was normal. Beginning at eight years
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Carin holding ice above her head in the water

Ice baths and cold river swimming

My name is Carin. I grew up here in Massachusetts, I was an avid backpacker and through-hiker, ecologist, explorer, traveler, dancer, and a hard worker. Now, I’m lucky if I can complete 200 steps in a single day. I was diagnosed with fibromyalgia in 2017, it is a chronic condition that inflicts widespread pain, fatigue,
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Ellie we need to be believed

If only people had listened

My school life was very erratic let’s say. I attended all my infant school years and the staff there were incredible and very supportive, some of which I still have contact with to this day! I wasn’t diagnosed at this point as my difficulties were all down as psychological, but I did have my PEG
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a selfie of andrea in a car

My journey from “mushy muscles” to misdiagnosis

I was born in the ’70s… My parents were told I was born with “mushy muscles”. I didn’t walk until I was 20 months old, but I managed and I was cute. I was the firstborn on both sides of the family, so no other babies to compare to, though little things bothered my young
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tarryn is wearing a neck brace, and standing with her hand on her hip

I am ready to stand strong as an advocate

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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Angie wears a black dress and red shoes, and is surrounded by birthday decorations, glitter, and on the floor sits a zebra ball!

I had to heed my own advice and stop hiding my conditions

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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Molly out riding her horse

Working together for Molly

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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Being able to use my scooter to increase my independence and enjoying frozen yogurt with my amazing and empathetic son, Daniel.

Lost Identity

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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