Tag Archive: Diagnosis Journey
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
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 View page
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 View page
I am 54 years old. Last week I just got the diagnosis that I was begging, even crying out to find. Ehlers-Danlos syndrome. Sounds like a complicated name. Of course, telling your family for the first time is like, “You’ve got a problem with your ear? – no dad, E-H-L-E-R-S, not EAR!” What the heck View page
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 View page
One evening in 2007, I was on the computer at my home in Arlington, Virginia, browsing articles on CNN’s website when a headline caught my eye about a children’s band called The Wiggles. It said that a founding member had to quit performing due to a rare medical condition. It went on to describe his View page
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 View page
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 View page
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 View page
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 View page
