Tag Archive: hypermobility

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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My University Goal

I was 19 years old when I was diagnosed with hypermobile Ehlers-Danlos syndrome [hEDS]. This was an extremely difficult period for me as I was also in my second year of university studying for my BA Honours in Early-Childhood Studies. I was fortunate to have a smooth diagnosis; I was examined by a rheumatologist who
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I did not get answers until I advocated for myself

Over 10 years of “rest”… Over 10 years of “take it easy”… Over 10 years of “do some yoga and meditate”… Over 10 years of “maybe you should talk to someone”… Over 20 years of doctors shrugging me off with comments like “you’re too young and healthy to have issues”…”it’s just tendonitis”….”you’re a dancer, it’s
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The Ehlers-Danlos Society Center opens at Indiana University Health

INDIANAPOLIS, USA — The Ehlers-Danlos Society is pleased to announce the opening of The Ehlers-Danlos Society Center at IU Health, committed to advancing research, education, and patient care for those living with the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. A Center for Change The Ehlers-Danlos Society has donated $500,000
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