Category: Breaking Down Barriers Stories

Patrick's EDS Story

Labeled as a hypochondriac

CW: Contains mention of suicide I always had a slightly odd gait as a kid, was fidgety, and always uncomfortable sitting in chairs while in classrooms. Labeled as a hypochondriac by my father’s family and told how chubby, weak, soft, and attention-seeking I was; regardless of having 2 sets of tubes in my ears and […]
View page


breaking down barriers lori's story

A message to my fellow young zebras

Hello, my lovelies! My name is Lori, I’m 19, and I’m the founder of and writer at the blog ‘From Bud to Bloom’. It is all about my journey towards self-love and self-fulfillment as someone with chronic illness and mental health problems – I also happen to battle with hEDS, PoTS, ME, scoliosis and hip […]
View page


Being believed helped me to acknowledge that my pain is real

My greatest barrier with Ehlers-Danlos syndrome has been finding my own voice. Symptoms started as a young child with unbearable leg pain at night. Then, in high school, I began having many gastrointestinal issues. I still wanted to participate on my school’s cross country team; one day while running alone I lost consciousness. Once I […]
View page


Peighton Carter Speaking

My diagnosis has given me a platform to spread awareness

I always knew my feet were hypermobile since I was a teenager, but I had no idea about Ehlers-Danlos syndrome until I was 30. By then, my time in the military had worn away my lower extremities.  I had my first foot fusion at 22, but it wasn’t until I developed dysautonomia and postural orthostatic […]
View page


Managing a TV Career with cEDS

There has been a great deal of talk in the press recently about the TV industry and the toll it takes on your mental health, both on and off-screen, and how the industry would shut down as we know it if all the freelancers walked out. There is an element of my journey that I’d […]
View page


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 […]
View page


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 […]
View page


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.  […]
View page


Slowly but surely I’m stopping EDS from winning

For my whole life I struggled with building strength, keeping up with peers, and not understanding why movements look so different when I do them compared to others. As an adult, I now know what Ehlers-Danlos syndrome is: suddenly everything makes sense and the questions have been answered.   When it came to my muscles, they […]
View page