Tag Archive: Diagnosis Journey

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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My twin sister and I fought to be believed

At 5 years old I remember my thumb and hips popping in and out of place. I would be in horrendous pain but I would keep it to myself. Then I would chat with my identical twin sister then we realized that our pain was very similar.  At around the age of 13, I decided
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Lane's streaming logo, DisabledGooru

How my gaming career helps me to raise awareness for EDS

My name is Lane Cooper. On October 23, 2016, I was stacking firewood with my uncle, when I went home I started urinating blood. I went to the ER and was diagnosed with autosomal dominant polycystic kidney disease (ADPKD), which started my medical decline.  A few months later I started having a lot of pain
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sarah's legs crossed with her ankles at a 90 degree angle

One of those things that turned out to be an EDS thing

When I sit, invariably I cross my ankles and they relax into this position. Sadly, this also means they give whenever they feel like it. My story is not uncommon in that things I can do, I thought were fairly ‘normal’, have apparently turned out to be ‘EDS-things’; such as my ankles relaxing up to
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Sophia wears a red dress and is standing in front of a large hedge. She has a red bow on her head and is holding some red tulle

Finally having a name for my issues gave me so much relief

Ever since I was young, I was always “different”. I amused my friends and adults by contorting my body into weird shapes. The hyperextension in my arms, abnormally long fingers, and height, in particular, were things that people would often comment on. Starting around the time I was about 12 or 13, I started having
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a selfie of moira

With diagnosis, I can tackle my symptoms more efficiently

I was diagnosed with EDS after two years of doctor visits and a lifetime of unrelated health problems. Originally, I was searching for the reason why my chronic pain syndrome started after a bad car accident in 2019. My body seemed to get weaker and weaker, my joints seemed to collapse in on themselves, and
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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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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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