At age 24, I began having severe body pain after having our second child. My family doctor was amazing! After a thorough exam, he referred me to a rheumatologist. In no time, I had a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS). After listening to my entire history of being a dancer as a child, always […] View page
TW: Contains discussion of suicide. I’m Charlotte, I’m 23 and I was diagnosed with joint hypermobility syndrome, IBS, chronic reflux, costochondritis, vitamin B12 deficiency, and possible pernicious anemia. I was originally diagnosed with ‘probable fibromyalgia’ when I was 16 years old. At the time I was told ‘you will probably grow out of it’ and […] View page
The first time I went to a doctor to try to determine what was causing my pain and fatigue, I was 14. The doctor identified my mitral valve prolapse but, other than that, he deemed me to have been perfectly healthy. I didn’t aggressively pursue a diagnosis, I just knew my neck and back hurt […] View page
I was diagnosed with hypermobile-Ehlers Danlos syndrome (hEDS), Postural orthostatic Tachycardia syndrome (PoTS), and related comorbidities when I was 20. It represented the culmination of six years of searching for answers to explain my complex symptom presentation and the reason for a lifetime of recurrent pain. After such a tumultuous diagnostic odyssey, it was also […] View page
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
How many times have you been told you’re crazy? Getting diagnosed with Ehlers-Danlos syndrome is difficult enough, but EDS brings along a bunch of other issues that can make your life hell. Throughout most of my life I was always told nothing was wrong with me when I had an injury. Something would hurt, I […] 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
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
I’m Gracie Anne, this is my experience of living with hEDS. I was officially diagnosed at 13. I’ve had 5 surgeries in a two year time span, 13 hard casts and numerous braces. The number of dislocations is astronomical, the broken bones and torn ligaments were never ending. Doctors didn’t know what to do with […] View page
