For the time being, my hypermobile Ehlers-Danlos syndrome (hEDS) has me reliant on mobility aids. My hEDS is typically quite invisible. Well, aside from that time my brain swelled and 1/3 of my hair temporarily fell out. Oh EDS comorbidities, you are full of surprises. No worries, I combed it over and it grew back.
View page
I’m Evy and this is my EDS story. I was diagnosed with hEDS when I was 10 years old. Leading up to my diagnosis, my pediatrician was suspicious because I had some symptoms such as scoliosis, Idiopathic Thrombocytopenia Purpura (ITP), hernia, flat feet, flexible joints, digestive issues, etc. It took a few years, but I
View page
Over 10 years of “rest”… Over 10 years of “take it easy”… Over 10 years of “do some yoga and meditate”… Over 10 years of “maybe you should talk to someone”… Over 20 years of doctors shrugging me off with comments like “you’re too young and healthy to have issues”…”it’s just tendonitis”….”you’re a dancer, it’s
View page
My first symptoms of hypermobility spectrum disorder (HSD) were simple and seemingly harmless. I was super bendy. I could do all sorts of contortions and party tricks. As I got older however, each year came with more problems. By age 10 I was having chronic nausea, and by age 11, my first symptoms of Postural
View page
Before I was diagnosed with EDS at the age of 37, I would have described myself as outgoing, friendly, brave, trusting and strong – but it wasn’t until now, 3-5 years after being officially diagnosed, that I consider I truly know what these words mean. I wanted to be resilient and courageous, pushing healthy boundaries
View page
My story is like most with EDS. As a young child, I heard “it’s just growing pains” multiple times. As a teenager, my immune system dipped and infection wreaked havoc on my body. It wasn’t until a virus came a few years later that left permanent damage. I was diagnosed with hypermobile EDS (hEDS) in
View page
I’d always been hypermobile as a child and used it to my advantage as a ballet dancer, but I was forever in pain and getting injured. We was always told by doctors that it was just growing pains and “double jointedness” is common in children. I then moved away and started university. Whilst I was
View page
I’m Spencer, I’m 16 years old, and I have hEDS. I wanted to share my story, because I know that there isn’t a lot of visibility for the men out there with EDS. My symptoms started when I was 6 years old. It started out as pain and instability in my ankles and knees, which was
View page
I tell you this as a person who has never wished to pace herself that we sometimes need to take a step back and look at ourselves from the eyes of our loved ones.
View page
