Tag Archive: Diagnosis Journey

valerie story

Spending my childhood in PT gave me my passion

My name is Valerie, you can reach me at the @bendybodyblog! I’m about to be 23 and currently in graduate school, studying for my doctorate in physical therapy! I have Ehlers-Danlos syndrome (EDS), Postural tachycardia syndrome (PoTS), celiac disease, chronic migraines, eczema, asthma, and suspected Mast Cell Activation Syndrome (MCAS). Throughout my studies and activities, I […]
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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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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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Dana's story

I’ve spent the past two years rediscovering myself

TW: Contains mention of suicide. I was 5 years old, excitedly cheering on my mom at her softball game, City Park ball fields, Fort Collins, Co. Mom hit the ball, I jumped and cheered with the others in the bleachers, slipped and fell through the bleachers, and life changed. Climbing back up, lifting my pant […]
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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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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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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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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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