Recently, I was described by a friend as “the healthiest looking sick person” they knew. It was meant as a compliment, and I thanked them. I may look like a fit and well twenty-two-year-old woman, but in actuality, I am living with a disorder that consistently causes pain and hinders my life. It wasn’t until […] View page
I’m Ashley, 34 years old from Canada and living with hEDS, PoTS, gastroparesis, mast cell, and all the lovely things that come with EDS. My story is lifelong and has been physically and mentally draining. As a child I had many EDS traits that caused me problems, but I did not know at the time […] View page
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 […] 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
My mother and father said the moment I was born the doctors knew something wasn’t quite right. I was born 11 weeks early (I decided to make an early appearance) by emergency c-section. I’m a fraternal twin, and I was born with congenital bilateral hip dysplasia and a collapsed lung. They didn’t really give me […] View page
My name is Sue, and I live in Melbourne, Australia and I have arthrochalasia EDS (aEDS)/Osteogenesis Imperfecta. My diagnosis was confirmed by genetic testing in the USA, and diagnosed by The Austin Hospital Genetics Department here in Melbourne. I also have a very rare anyuresum, growing since birth called a Dehiscence High Ridding Jugular Bulb. […] View page
