Tag Archive: hypermobile EDS

woman sitting in a wheelchair with her arm laid over the back

I feel you, I hear you, and I want you to know you’re not alone.

My name is Julia Brouwers, I’m turning 24 soon, and I live in a small city close to Amsterdam in The Netherlands. I am trying to create more awareness for people with disabilities. I recently wrote a small post about having a disability in the business world and unexpectedly it has been viewed over 1.38
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Rebekah has blonde cropped hair and looks into the camera, wearing tortoiseshell glasses, a black shirt, and a dreamcatcher necklace.

I will never be the same as before, but I am definitely NOT less

My name is Rebekah. I am a former professional vocalist and theatrical performer. I am a travel expert, travel designer, and marketing manager, mother of three amazing sons, and wife to the most supportive husband in the world. My life was going pretty well until seven years ago. We were in a car accident. Our
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Sara J playing the flute

A musical spoonie’s journey

Little did I know that my flute career path would essentially be stopped in its tracks before I had an opportunity to really get going. By all accounts everything was in place. I was all set. I had the best teachers. I was at my dream school of music. I made it! I am a
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Stephen's story with Ehlers-Danlos syndrome

I struggle to find a job that will accept me

It would take me hours to tell my story fully. But here is a start.  One day just before Christmas I got up off of my bed and felt excruciating pain in my knee, I went to the emergency room and because I could still move my knee they sent me home. A few months
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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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Yamini's story

The hardest part is learning what my body can cope with

Adjusting expectations of myself has been the hardest part of coping with EDS. Just like many people with Ehlers-Danlos syndrome, I remember my childhood as a series of hospital, physiotherapy, and orthodontist appointments. I was forced into wearing kids’ Birkenstocks and doing foot-strengthening exercises I never really liked. It wasn’t until my mid-teens that the
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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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Nicki's story

It took 40 years to receive my EDS diagnosis

May is EDS awareness month and I’ve decided to take part in the #myEDSchallenge by writing about my own personal journey.  I am 47 years old and became symptomatic in the 1970s with a collapsed bowel, resulting in various visits to children’s wards at both St Thomas’ Hospital in London and my own local hospital.
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sarah's story

The bad football tackle that set everything into motion

TW: contains mention of suicide. The Tale of the Terrible Tendons I grew up in many different parts of the world but spent most of my childhood years in Sweden. That is where my story begins! I was an avid athlete and loved football. I loved being active, and I was darn good at it
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