Tag Archive: Self-Advocacy

yasmine smiling at the camera with her knee up

The important things lie in the imperfections

I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) at birth; my mother had it and when her water broke a month and a half early, it was confirmed that I had it too.  As long as I can remember I’ve been in and out of hospitals with some new injury or joint issues. Each year […]
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Aiming at making a difference

My name is Isabella and I just turned 22 at the end of May, which is the awareness month for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) back in 2014 and last summer I got the confirmation of my diagnosis based on the new evaluation criteria […]
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michelle's story

Self-advocacy is the most important tool in my toolbox

Don’t be a wallflower, find what works for you! I used to think everyone had constant aches and pains. My high school track and field team delighted me—I adored being part of that group! But running hurt my knees and my back. I had a whole box filled with braces, aces, and splints. So instead, […]
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Kaily's story

Advocacy became my biggest lifeline during my diagnosis journey

TW: Contains mention of suicide. For years, the struggle to find the words to raise awareness for my genetic condition, vascular Ehlers-Danlos syndrome (vEDS), has mimicked the years of working through speech therapy, as my family tried to decipher the tongue-tied soliloquy I called talking. A million details scrambled together, just enough to make it […]
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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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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 EDS diagnosis was questioned because of my weight

“Wait, you can’t have Ehlers-Danlos syndrome… can you?” So, luckily for us EDSers, medical professionals out there are slowly (oh so slowly) starting to recognize the struggle we have with this chronic, genetic, faulty collagen, pain-fuelled condition. Many don’t understand it, some even deny its very existence, but a few have embraced the need for […]
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My symptoms were dismissed as psychosomatic

I was diagnosed with hypermobile-Ehlers Danlos syndrome (hEDS), Postural orthostatic Tachycardia syndrome (PoTS), and related comorbidities when I was 20. It represented the culmination of six years of searching for answers to explain my complex symptom presentation and the reason for a lifetime of recurrent pain.  After such a tumultuous diagnostic odyssey, it was also […]
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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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