Tag Archive: Pain

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
View page


a selfie of andrea in a car

My journey from “mushy muscles” to misdiagnosis

I was born in the ’70s… My parents were told I was born with “mushy muscles”. I didn’t walk until I was 20 months old, but I managed and I was cute. I was the firstborn on both sides of the family, so no other babies to compare to, though little things bothered my young
View page


Barbara sits in front of her wheelchair, with a dog sat in her wheelchair, and a horse stood on a block behind her

My life finally started after diagnosis

It took almost 24 years for me to be diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). For 24 years I was neglected by my medical professionals. When I finally got diagnosed, I was not sad, it came like a blessing to me. I felt a big relief because I was seen, heard, and believed. I was
View page


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
View page


quinn j story

YouTube helped me to advocate for a diagnosis

My name is Quinn and I’m just like you. I love to be with my friends, I love to cook, create art, and be in nature. I have a fascination with decorative skulls and an obsession with collecting flavored chapstick. I have lived with chronic illnesses my whole life. I was born with a urea
View page


headshot ramona palmer

The toll that my EDS takes on my body and my identity

I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) when my youngest child was seen and diagnosed. I wasn’t sure if I should be excited to finally know why! But I was scared for us both. I bruise easily, will be 50 in several weeks, and live in constant pain of some degree. My hip and
View page


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
View page


Jasmine story

I channel my pain into passion when I dance

Hi, my name is Jasmine and this is my story of living with EDS.  Growing up, dance was like oxygen for me, I needed it to survive. I was dancing six days a week by the age of 9 and dance was my passion. I was constantly told by my dance teachers that only weak
View page