Tag Archive: hypermobile EDS
The Ehlers-Danlos Society is delighted to announce that 1000 individuals have been invited for enrollment for the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) study! We continue to recruit for the study to ensure 1000 viable samples are obtained and are excited at the progress the study has made despite the challenges of the pandemic. HEDGE is View page
The Ehlers-Danlos Society is delighted to have provided funding as part of the Molecular Studies in hEDS and HSD $1 million grant for this research project titled, “Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD): destructuring the fibroblast secretome to define bioactive molecules and disease mechanisms, and in vivo translational studies”, with Professor Marina View page
Ever since I could remember, I have had to endure random and unexplainable injuries, body discomfort, and health complications, often what doctors brushed off as “growing pains” my entire life. It started with virtually harmless occurrences, like being able to do weird “party tricks” for my family with my double-jointed ligaments or always being in View page
Disclaimer: Individuals undertake their chosen activities at their own risk. My name is Jack Orman, I am 24 years old and currently living in Colorado. I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in December of 2016 at the age of 19. I wanted to share my story because there is a lot of fear View page
My story is so crazy, but everyone probably says that. I didn’t have a parent who watched over my health as most parents do but looking back I can tell it was there. I was the clumsiest kid ever and had belly aches. I started having symptoms that I noticed when I got stationed in View page
When I was a kid, I was always hurting myself whether a sprained ankle a trip, or a fall. I experienced growing pains, horrible menstrual cycles. I was always very limber or “double-jointed”. I could dislocate my shoulder almost on command. I could fold into a human pretzel and touch my hands flat to the View page
I finally figured out why my body seemed to be acting against me. I was 20 years old when I was first diagnosed with Ehlers-Danlos syndrome (EDS). I was in my third year of college and was studying pathology. As I read a short paragraph in a long textbook about EDS, I knew right then View page
My name is Carin. I grew up here in Massachusetts, I was an avid backpacker and through-hiker, ecologist, explorer, traveler, dancer, and a hard worker. Now, I’m lucky if I can complete 200 steps in a single day. I was diagnosed with fibromyalgia in 2017, it is a chronic condition that inflicts widespread pain, fatigue, View page
Hello, my name is Alyssa Kelly, and I was formally diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) by a geneticist when I was 21. My mother knew something was wrong from the day I was born prematurely. From that day forward it started, I had five sets of tubes from age 6 months to 5 years. View page
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