Tag Archive: hEDS

I’ve learned so much from connecting with others in the community

At age 24, I began having severe body pain after having our second child. My family doctor was amazing! After a thorough exam, he referred me to a rheumatologist. In no time, I had a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS).  After listening to my entire history of being a dancer as a child, always […]
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My diagnosis was the light at the end of the tunnel

TW: Contains discussion of suicide. I’m Charlotte, I’m 23 and I was diagnosed with joint hypermobility syndrome, IBS, chronic reflux, costochondritis, vitamin B12 deficiency, and possible pernicious anemia. I was originally diagnosed with ‘probable fibromyalgia’ when I was 16 years old. At the time I was told ‘you will probably grow out of it’ and […]
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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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Having someone who understands every unstable step

My mother and I were diagnosed in tandem. My mother was 39 but looked 19, living a life in chronic pain with constant joint instability. I was 6, and sitting in the doctors office in a W banding my fingers backwards so my hand looked like a skydiver. In the 23 years that have followed […]
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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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EDS was my “aha! moment”

I am 61 years old, and a little less than two years ago I was diagnosed with hypermobile EDS (hEDS.) I am grateful for all the research on EDS, the informative resources available on The Ehlers Danlos Society’s website, and the prompt answers to all of my questions. It’s tremendous to not feel alone. 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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