Tag Archive: surgery

I finally got some answers once I was looked at as a whole person

When I was little, my favorite book was Heidi by Johanna Spyri. I have read the book so many times that I think I’ve got it memorized. The character I always identified most with wasn’t Heidi, even though my mom always compared me to her because of my fiery personality. The character I personally identified
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21 surgeries and counting

Success consists of getting up just one more time than you fall. (Oliver Goldsmith) For me, the question is not whether you get up after a fall, but how often you can do this. Ten times, fifteen times, twenty times, even more? One could consider major surgical operations are such downfalls for people. The trauma
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Alyssa on her wedding day leaned over and kissing her husband

My EDS is always two steps forward and five steps back

Hello, my name is Alyssa Kelly, and I was formally diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) by a geneticist when I was 21. My mother knew something was wrong from the day I was born prematurely.  From that day forward it started, I had five sets of tubes from age 6 months to 5 years.  
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caitlin walking towards the camera with her thumbs looped over her pockets

I love to share my EDS and mental health story

I have always been hypermobile, had elastic skin, joint pain, and lots of other common symptoms of Ehlers-Danlos syndrome. However, I was not diagnosed until I was almost 16 years old after a major sports accident. The accident caused a patellar dislocation with a torn meniscus, a slipped disc in the lumbar section of my
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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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Nicki's story

It took 40 years to receive my EDS diagnosis

May is EDS awareness month and I’ve decided to take part in the #myEDSchallenge by writing about my own personal journey.  I am 47 years old and became symptomatic in the 1970s with a collapsed bowel, resulting in various visits to children’s wards at both St Thomas’ Hospital in London and my own local hospital.
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tess story

I will never let my pain or GI issues beat me

My name is Tess.   I’m 27 years old and I love life, I really do. Everything about it – people, animals, my pets, our beautiful surroundings, even my mind, and body… of which my body is pretty defective. When I was 15 years old I hit puberty and my life was shaken up. I always
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Dear Warriors…..

Life has this funny way of telling you things you can and can’t do, over and over again. As a child, we knew something was “off” with the way I acted, walked, and did other activities, but we weren’t quite yet at a stage where we could pin point what it was. As I began
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