Archives

SHINING AS BRIGHTLY AS I CAN

by Alyssa G. There is a eutopic expectation that most people have regarding their path and future, but life has a tendency to bring in complications that challenge the presumption people form for themselves. Life does not discriminate, it will benefit or diminish whoever it pleases. There is no use in cursing life itself; there […]
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IF I HAD KNOWN

By Jess H. I recently found out, through a series of seemingly unrelated minor health disasters, that I have a genetic connective tissue disorder known as Ehlers Danlos syndrome or EDS for short. EDS involves connective tissue that is missing or weakened throughout the body, affecting multiple systems in sometimes mysterious ways. It can take […]
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I WANT TO LIVE, NOT JUST SURVIVE

by Camilla A. It started slowly. Some periods of fatigue, some periods of pain, and sometimes I was almost fine. At this time my doctor didn’t want to search any further, it was just stress. But I’m not a stressed person and I kept telling them, “Ok listen to me this is my body, I […]
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ONE DAY AT A TIME

by Jay B. Being diagnosed with hEDS at age 29 has brought many challenges to my life including trying to stay mentally sane. Being a man in the construction industry most of my adult life, I had no idea that other people didn’t feel like this. I always wondered why I had to wear braces […]
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AN 8-YEAR-OLD FORCE OF NATURE

by Gillian M. (with a little help from Mom) I am an 8-year-old bundle of energy and there is nothing I won’t try! My mom calls me “a force of nature on two legs!” I love to run, jump, and spin! I just love to be in motion and the higher and faster the better! […]
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THE QUIET SIDE OF EDS

#MyEDS by Jimmy M. 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 […]
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SYMPATHY, ACCEPTANCE, & HOPE

by Danyelle C. I found out I have hypermobile Ehlers-Danlos syndrome (hEDS) a few months ago and I am still having trouble accepting it. I was diagnosed with Chronic Fatigue Immune Dysfunction (CFIDS) and fibromyalgia years ago and have long ago accepted those conditions. The part that makes hEDS different is that no amount a […]
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TAKING BACK CONTROL

by Dan R. Throughout my life, my hands have ached and popped. As a teenager, I developed the very bad habit of cracking my knuckles for relief. I thought I had arthritis even though no blood test had ever confirmed as much. Eight years ago my knee dislocated while swinging away at a co-ed softball […]
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THE DEFINING DECADE

By Amanda P., Ph.D. My third decade, the roaring twenties, was full of personal and professional accomplishments, with mysterious musculoskeletal and systemic health issues woven throughout. My story is of an athlete’s life stopped in its tracks and then redefined several times. It’s of a successful academic, an emerging global public health leader, and world […]
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MAKING THE WORLD LISTEN

by Aaliya E. I first read the words “Ehlers Danlos Syndrome” when I was fourteen years old. A life defining moment that I won’t ever forget. It was late at night, well into my summer holidays, even so, I was meant to be asleep. Instead, frustrated and in pain I was searching the internet for […]
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