Tag Archive: hypermobile EDS

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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sarah's story

The bad football tackle that set everything into motion

TW: contains mention of suicide. The Tale of the Terrible Tendons I grew up in many different parts of the world but spent most of my childhood years in Sweden. That is where my story begins! I was an avid athlete and loved football. I loved being active, and I was darn good at it
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headshot chloe story

None of my friends understand the toll that my EDS takes on me

According to my doctors, I have had hypermobile Ehlers-Danlos syndrome (hEDS) since I was a baby, but I was not diagnosed with it until I was 13.  Before this I pretty much lived a normal childhood, hanging out with friends both in and out of school, shopping, cinema, and much more. I was, however, very
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Saryna's EDS story

I’ve learned to stop being ashamed of my condition

I have lived my whole life with Ehlers-Danlos syndrome (EDS), I don’t know what “normality” is. My whole life has revolved around my disability, my friendships, my relationship, and everyday life. Growing up, I was always that odd one out because of my disability; I had to wear special shoes at school that mostly got
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Peighton Carter Speaking

My diagnosis has given me a platform to spread awareness

I always knew my feet were hypermobile since I was a teenager, but I had no idea about Ehlers-Danlos syndrome until I was 30. By then, my time in the military had worn away my lower extremities.  I had my first foot fusion at 22, but it wasn’t until I developed dysautonomia and postural orthostatic
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I had my lightbulb moment at 50 years old

I am 80 years old. I was diagnosed with hypermobile EDS at age 50. I participated in an Arthritis Newsgroup (this was years before social media), and a Norwegian girl reported that she had just been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). She listed her symptoms and the lightbulb moment happened. She was talking about
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February 2020 HEDGE Study Update

The Ehlers-Danlos Society would like to give special thanks to members of our community who took part in the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study screenings in Watford, UK, and Ghent, Belgium in February! As we search for the genetic cause or causes of hypermobile EDS (hEDS) we have now enrolled 413 participants into the
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Taking up modeling has made me proud to be different

When I was growing up I was always getting hurt. I remember crying every night because my body was in so much pain. I had endless dislocations and subluxations, not to mention my PoTS and other issues that EDS has given me.  No amount of pain medication and ice packs could mask my excruciatingly painful
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