Tag Archive: advocacy

a selfie of mirna smiling at the camera

I was diagnosed with cEDS after a lifetime of symptoms

I have been dealing with chronic pain for a long time. I had a long journey looking for answers. I was finally diagnosed at age 49, in April 2019, when a genetic test confirmed classical Ehlers-Danlos syndrome (cEDS).  When I was little I remember the pain in my legs and feet after any activity, and
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harry sitting on his motorized scooter

My catheter has given me control of my life back

My name is Harry, although diagnosed at 17 and being hypermobile Ehlers-Danlos syndrome (hEDS) didn’t affect me until I had a severe and dangerous prostate infection. This flared up my EDS. It was my bladder which EDS hit hardest first. I began retaining urine because my bladder muscles were not able to work, but I
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a selfie of a woman wearing glasses and a neck brace

I was told that I ‘just have an achy body type.’

I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in 2018 at age 33. I had at this point had symptoms my entire life (hypermobility, headaches, joint pain, fatigue, gastrointestinal issues, autonomic intolerance etc.), but no one had pieced together my jigsaw. In 2015 I was pregnant with my first baby. I had a very difficult
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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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Pashondra has her port accessed in hospital, wearing a face mask, due to complications from Ehlers-Danlos syndrome

I choose to be a local activist for awareness and change

My name is Pashondra James, I am 45 years old and from NC. I am the mother to two beautiful angels, Myecia Abri and Aric Isaiah James who passed away at birth due to EDS related complications. I did not know until 2011 that I was fighting a genetic illness called hypermobile Ehlers-Danlos syndrome (hEDS).
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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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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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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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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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Jameela Jamil Presented With The Ehlers-Danlos Society Patient Advocate Award

The Ehlers-Danlos Society was proud to present Jameela Jamil, British actor and activist, with the Patient Advocate of The Year award tonight, at its Global Learning Conference in Nashville.  Accepting the award via video link, Jameela thanked The Ehlers-Danlos Society for recognizing her with the award, and for welcoming her into their community: “I am
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