Tag Archive: Pain

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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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 […]
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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 […]
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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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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 […]
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headshot chloe story

None of my friends understand the toll that my EDS takes on me

According to my doctors, I have had hypermobile Ehlers-Danlos syndrome (hEDS) since I was a baby, but I was not diagnosed with it until I was 13.  Before this I pretty much lived a normal childhood, hanging out with friends both in and out of school, shopping, cinema, and much more. I was, however, very […]
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