Tag Archive: advocacy

Marina takes a selfie wearing a Society tshirt in black with a white zebra. Grass and trees form a backdrop.

One story, one action, one change at a time

I come to you today as a patient expert, disability justice activist, and advocate.   Advocacy and activism is work that many people find themselves doing as a direct result of experiences they’ve had in their lives or been part of through the lives of those close to them. While not always the case, I have […]
View page


A photo of me during my time in service with the 891st Engineer Battalion, 235th Regional Support Group of Fort Riley, Kansas.

I advocate for those with invisible disabilities

I served eight years in the United States Army as a 12 bravo -Combat Engineer. We carry all explosives that you would need to clear or breach any obstacles in the army’s way. ⁠ ⁠ I always had issues growing up but never could find a reason for my pain and joint issues. One day, […]
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


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 […]
View page


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 […]
View page


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 […]
View page


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 […]
View page


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 […]
View page


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). […]
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