Tag Archive: awareness

gafsa smiling in her wheelchair

My mission to raise awareness in South Africa

My name is Gafsa Garson and I am known as Gafsa Bux. I was an operational nursing manager at Groote Schuur Hospital. I started having severe back pain in 2018, I saw a neurologist and an orthopedic doctor, as I was also complaining of severe pain in my hands. The neurologist sent me to a […]
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My bladder journey

“Hi, I’m @uniquely_jeantique and for Urology Awareness Month I’m going to tell you a bit about my bladder journey! I have hEDS and bladder complications are one of the many comorbidities I struggle with, but for years I was told I “just” had interstitial cystitis and was dismissed by doctors who didn’t take any of […]
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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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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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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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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 […]
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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 […]
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My pain management journey

Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, I […]
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