My name is Luca (He/Him) and I’m 36 years old. I received a diagnosis of classical Ehlers-Danlos syndrome (cEDS) at age 24. For 14 years I have been told that I’m a hypochondriac and ‘exaggerating’. The diagnosis gave me back my dignity, but for several years I managed my health badly, giving up View page
I was very blessed to have an early diagnosis at five years old. Since my geneticist has played a major role in navigating my healthcare, I contribute my level of function and successful medical treatments to an early diagnosis. As a physician assistant myself, I personally know what it is like to be on both View page
Hi! My name is Paul and I’m in the UK. I have finally come to the realization that Ehlers-Danlos syndrome (EDS) may be behind my ‘troubles’, but more importantly in relation to Craniocervical Instability (CCI). A few facts to start with. I was, what we call over here, ‘double-jointed’, as a child mainly around the View page
I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) when I was 14 years old. As a child, my mother took me to the ER for dislocated shoulders so often that the doctors thought I was being abused. It wasn’t until my knees started dislocating as a teen that I was given an official diagnosis. I View page
Hi, I am Devyn and I am 21 years old. I have classical EDS (cEDS). It took me six years to get a diagnosis, from age eleven until age seventeen. I started noticing symptoms at age 11, but now looking back, I have had symptoms since I was younger. I would constantly sprain my ankles, View page
All of my life I knew I was different. Constantly spraining my ankles, being able to take my jaw out of the socket, very flexible, knee surgeries, premature labor with both children, bruising easily… the list keeps going and going. In 2014 I almost died from an internal hernia that had pulled my small intestine View page
My name is Kayla Myers. I am 24 years old. I have many health issues, physical and mental. I am a blind gamer, I play video games with no useable sight. I was diagnosed with classical EDS (cEDS) in 2019. In 2016 I had a hospital admission that seemed to bring all of my EDS View page
I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) at birth; my mother had it and when her water broke a month and a half early, it was confirmed that I had it too. As long as I can remember I’ve been in and out of hospitals with some new injury or joint issues. Each year View page
Probably one of the hardest things for me to do is actually talk about myself. So this is no small task. I am a 49-year-old mother of three grown children ages 25, 28, and 33. I’m also a Grandma of a 7-year-old girl and twins, a boy and a girl age two. My husband View page
My name is Alexander VanHouten. I have Ehlers-Danlos syndrome, and though living with pain and constant threat of injury every day is no walk in the park, I am thankful for the trajectory my life has taken because of this disease. When I was a child I was, like most young boys, a hyperactive, rambunctious View page
