My name is Kyle Fries and I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) when I was 14 years old. I have had problems for as long as I can remember. I have flat feet which uses to wake me up crying to my mom wondering why I was in pain. My mom was diagnosed
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I had my first shoulder dislocation at age 12 and my first knee dislocation; I now have about ten a day! Growing up I was naturally flexible and didn’t have to stretch like everyone else at gymnastics, dance, and cheerleading but little did I know this was not a good thing. From a
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No Zebra looks the same. No stripe is the same. Every body, experience, and combination of symptoms for those with Ehlers-Danlos syndrome (EDS) is different. Part of what makes EDS so challenging to diagnose and treat is the fact that we have an infinite number of experiences and combinations of symptoms. EDS is a condition
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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
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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
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When I was two years old, I peered through the window of the dance studio to watch my three older sisters take their classes. I was ready for my turn. Little did my mom realize how much dance would impact all of our lives. My sisters and I all continued dancing through high school and
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When I was little, my favorite book was Heidi by Johanna Spyri. I have read the book so many times that I think I’ve got it memorized. The character I always identified most with wasn’t Heidi, even though my mom always compared me to her because of my fiery personality. The character I personally identified
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My name is Charlotte I am 23 years old and I have hypermobile Ehlers-Danlos syndrome (hEDS) and Marfans syndrome. For as long as I can remember I have ached. Especially in my back and legs. I always presumed it was because I was quite tall (5 foot 8), but I noticed that I can’t stand
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TW: Contains discussion of eating disorders. I am 25 years old, I have had joint pain since I was a child, my mother constantly took me to the pediatrician and he indicated that they were typical growing pains. At 9 years old I began to have gastrointestinal problems such as chronic gastritis, lack of appetite,
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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
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