Tag Archive: hypermobile EDS

My strength is my superpower

I was diagnosed at 42 but all the signs were there from the start. As a child, I would sit in the ‘W’ position, I would often stand with my feet completely flexed so all the weight was on the outside ankles, I could do splits both ways and I got very tired walking. In
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Embracing my walker and recognising my self-worth

For the time being, my hypermobile Ehlers-Danlos syndrome (hEDS) has me reliant on mobility aids. My hEDS is typically quite invisible. Well, aside from that time my brain swelled and 1/3 of my hair temporarily fell out. Oh EDS comorbidities, you are full of surprises. No worries, I combed it over and it grew back. 
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The emotional toll of being doubted

In my 30’s I started to develop significant pain in all of my joints, but mostly stemming from my spine. When I got pregnant at 31, I started to have excruciating pain in my back. I went to physical therapy and was told it was normal.  At 36, I had my first spinal surgery, a
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I was told I had anxiety, and there was nothing they could do

How many times have you been told you’re crazy? Getting diagnosed with Ehlers-Danlos syndrome is difficult enough, but EDS brings along a bunch of other issues that can make your life hell. Throughout most of my life I was always told nothing was wrong with me when I had an injury. Something would hurt, I
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I didn’t want to be treated differently

I’m Evy and this is my EDS story. I was diagnosed with hEDS when I was 10 years old. Leading up to my diagnosis, my pediatrician was suspicious because I had some symptoms such as scoliosis, Idiopathic Thrombocytopenia Purpura (ITP), hernia, flat feet, flexible joints, digestive issues, etc. It took a few years, but I
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Just knowing what I had felt so liberating

I’m Gracie Anne, this is my experience of living with hEDS. I was officially diagnosed at 13. I’ve had 5 surgeries in a two year time span, 13 hard casts and numerous braces. The number of dislocations is astronomical, the broken bones and torn ligaments were never ending. Doctors didn’t know what to do with
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HEDGE Study Update

Last week the Hypermobile EDS Genetic Research Network met at the Annual Society of Human Genetics conference. A truly collaborative and international group, the HEDGE network, consisting of leading authorities in human genetic research, lead the innovative HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) research study.  By bringing together these medical experts and through building the HEDGE
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The HEDGE study hosts its seventh screening

The Ehlers-Danlos Society is delighted to have held its seventh screening this weekend, for the groundbreaking HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) study, devoted to finding the underlying genetic markers for hypermobile EDS (hEDS). Of the subtypes of Ehlers-Danlos syndromes (EDS), only the hypermobile type does not yet have an identified genetic marker. It is also
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