My name is Luca (He/Him) and I’m 36 years old. I received a diagnosis of classical Ehlers-Danlos syndrome (cEDS) at age 24. For 14 years I have been told that I’m a hypochondriac and ‘exaggerating’. The diagnosis gave me back my dignity, but for several years I managed my health badly, giving up View page
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, View page
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, View page
CW: Contains discussion of self-harm Growing up I felt unique and different; I used to always freak out my friends by hyperextending my elbows and thumbs. I had no idea what Ehlers-Danlos syndrome was, nor did I know how it was going to affect my life in the future. I went to college at Christ View page
From a young age, I had various injuries and health concerns. We knew I was hypermobile but this was never linked to any other concerns. I began rock climbing at age 20. I had never been able to exercise without feeling self-conscious or ridiculed for my lack of coordination or ‘effort’ due to fatigue. But View page
My name is Tess. I’m 27 years old and I love life, I really do. Everything about it – people, animals, my pets, our beautiful surroundings, even my mind, and body… of which my body is pretty defective. When I was 15 years old I hit puberty and my life was shaken up. I always View page
My story with classical-like Ehlers-Danlos syndrome (clEDS) started from birth. I have always struggled with bowel problems, and I could not walk far or even sit down without my knee caps popping out of place. At the time my doctors and physiotherapist did not know what was wrong with me. I spent time in Great View page
For my whole life I struggled with building strength, keeping up with peers, and not understanding why movements look so different when I do them compared to others. As an adult, I now know what Ehlers-Danlos syndrome is: suddenly everything makes sense and the questions have been answered. When it came to my muscles, they View page
My name is Alexander VanHouten. I have Ehlers-Danlos syndrome, and though living with pain and constant threat of injury every day is no walk in the park, I am thankful for the trajectory my life has taken because of this disease. When I was a child I was, like most young boys, a hyperactive, rambunctious View page
