Tag Archive: cEDS

Me at home, most current photo, after work, I am a certified physician assistant.

I can connect with my patients on another level

I was very blessed to have an early diagnosis at five years old. Since my geneticist has played a major role in navigating my healthcare, I contribute my level of function and successful medical treatments to an early diagnosis. As a physician assistant myself, I personally know what it is like to be on both
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A selfie of Sherena, a brown-haired woman wearing a white, off-shoulder top

A tiger in a zebra’s body: coming to terms with my diagnosis

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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a selfie of paul sat on a sofa, with a bookshelf behind him

My journey with cEDS and CCI

Hi! My name is Paul and I’m in the UK. I have finally come to the realization that Ehlers-Danlos syndrome (EDS) may be behind my ‘troubles’, but more importantly in relation to Craniocervical Instability (CCI). A few facts to start with. I was, what we call over here, ‘double-jointed’, as a child mainly around the
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Growing up with cEDS

I am a 21-year-old female. I was diagnosed with Ehlers-Danlos syndrome (EDS) when I was 6 months old. My father has EDS as well, and he noticed when I fell off a couch that I had a cut shaped as a triangle or as I call them “smiley faces”. He automatically knew what I had
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Devyn sits on a hospital bed with her arms folded, her right leg in a pink cast

Navigating a pregnancy with cEDS

Hi, I am Devyn and I am 21 years old. I have classical EDS (cEDS). It took me six years to get a diagnosis, from age eleven until age seventeen. I started noticing symptoms at age 11, but now looking back, I have had symptoms since I was younger.  I would constantly sprain my ankles,
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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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