In my 30’s I started to develop significant pain in all of my joints, but mostly stemming from my spine. When I got pregnant at 31, I started to have excruciating pain in my back. I went to physical therapy and was told it was normal. At 36, I had my first spinal surgery, a […] View page
My mother and I were diagnosed in tandem. My mother was 39 but looked 19, living a life in chronic pain with constant joint instability. I was 6, and sitting in the doctors office in a W banding my fingers backwards so my hand looked like a skydiver. In the 23 years that have followed […] View page
Finding appropriate healthcare has been a nightmare. Not only do doctors not know about EDS in order to diagnose the disease, they know even less about how to treat the symptoms. My daughter was hospitalized and later diagnosed at the beginning of the opioid crisis (2017). Because of the new rules they “could not treat […] 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
I am 61 years old, and a little less than two years ago I was diagnosed with hypermobile EDS (hEDS.) I am grateful for all the research on EDS, the informative resources available on The Ehlers Danlos Society’s website, and the prompt answers to all of my questions. It’s tremendous to not feel alone. I […] View page
The irony of living in close proximity to Boston, MA, a city known for its medical advancements, is that with all the world-renowned care I sought, it still took over 15 years to finally have some answers. My name is Victoria, and I am a 26 year-old full-time Doctor of Pharmacy candidate in an accelerated […] 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
I was 19 years old when I was diagnosed with hypermobile Ehlers-Danlos syndrome [hEDS]. This was an extremely difficult period for me as I was also in my second year of university studying for my BA Honours in Early-Childhood Studies. I was fortunate to have a smooth diagnosis; I was examined by a rheumatologist who […] 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
I used to believe that I was just sensitive to pain and not as strong as others around me. To be truthful, I was average. Compared to my sister I was miles behind her in athleticism and energy, although I would attempt to keep pace in all walks of my life. I started noticing health […] View page
