Tag Archive: hypermobility

My twin sister and I fought to be believed

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
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Growing up with cEDS

I am a 21-year-old female. I was diagnosed with Ehlers-Danlos syndrome (EDS) when I was 6 months old. My father has EDS as well, and he noticed when I fell off a couch that I had a cut shaped as a triangle or as I call them “smiley faces”. He automatically knew what I had
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sarah's legs crossed with her ankles at a 90 degree angle

One of those things that turned out to be an EDS thing

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
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yasmin smiles at the camera as she climbs a rocky ledge

Rock climbing had held my joints together, until the pandemic came

From a young age, I had various injuries and health concerns. We knew I was hypermobile but this was never linked to any other concerns.  I began rock climbing at age 20. I had never been able to exercise without feeling self-conscious or ridiculed for my lack of coordination or ‘effort’ due to fatigue. But
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a selfie of moira

With diagnosis, I can tackle my symptoms more efficiently

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
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ceciley doing ballet

Our daughter is learning to speak up and advocate for herself

Cecily is a vibrant and social, but tender-hearted 12-year-old ballet dancer who, despite her multiple diagnoses, not only finds true joy in the day to day but inspires it in all of us.  After years of daily headaches (from the time she could express herself in words), “growing pains”, progressive bilateral leg deformities, and finally
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The Ehlers-Danlos Society responds to BSR statement on hypermobility guidelines

The British Society for Rheumatology (BSR) published a statement this week, concluding that they are of the opinion that the ‘evidence base is insufficient to support the development of guidelines for hypermobility’.  We are disappointed that the BSR has made this decision. We are also disappointed that the BSR never invited The Ehlers-Danlos Society and
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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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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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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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