Tag Archive: cEDS

Diagnosis gave me a whole new perspective on my life

All of my life I knew I was different. Constantly spraining my ankles, being able to take my jaw out of the socket, very flexible, knee surgeries, premature labor with both children, bruising easily… the list keeps going and going.  In 2014 I almost died from an internal hernia that had pulled my small intestine
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Kayla smiles into the camera

Working for accessibility

My name is Kayla Myers. I am 24 years old. I have many health issues, physical and mental. I am a blind gamer, I play video games with no useable sight. I was diagnosed with classical EDS (cEDS) in 2019. In 2016 I had a hospital admission that seemed to bring all of my EDS
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yasmine smiling at the camera with her knee up

The important things lie in the imperfections

I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) at birth; my mother had it and when her water broke a month and a half early, it was confirmed that I had it too.  As long as I can remember I’ve been in and out of hospitals with some new injury or joint issues. Each year
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a selfie of mirna smiling at the camera

I was diagnosed with cEDS after a lifetime of symptoms

I have been dealing with chronic pain for a long time. I had a long journey looking for answers. I was finally diagnosed at age 49, in April 2019, when a genetic test confirmed classical Ehlers-Danlos syndrome (cEDS).  When I was little I remember the pain in my legs and feet after any activity, and
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Moira's challenge with cEDS

My mother became a nurse to learn wound care

I was diagnosed with EDS at four years old after being admitted to the hospital with my ‘healthy as an ox’ brother with suspected child abuse. 2 weeks later I was discharged with a diagnosis of classical Ehlers-Danlos syndrome (cEDS), and next to no information. My mother (no history or diagnosis) then studied to become
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From veteran to medically retired with classical Ehlers-Danlos syndrome

My journey to a cEDS diagnosis

Probably one of the hardest things for me to do is actually talk about myself. So this is no small task.⁠ ⁠ I am a 49-year-old mother of three grown children ages 25, 28, and 33. I’m also a Grandma of a 7-year-old girl and twins, a boy and a girl age two. My husband
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Managing a TV Career with cEDS

There has been a great deal of talk in the press recently about the TV industry and the toll it takes on your mental health, both on and off-screen, and how the industry would shut down as we know it if all the freelancers walked out. There is an element of my journey that I’d
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My awareness mission

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
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My journey with EDS and Chiari

“You just have to learn to live with the headaches.” The doctor looked at me with a complete lack of interest, clearly not caring about what that sentence might mean for a 20-something trying to adjust to adulthood as a firefighter/paramedic. I had spent months trying to ignore the pain, overcome the balance problems, and
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