Tag Archive: hEDS

Living with pain

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
View page


young teenage girl sitting in her wheelchair smiling next to a Christmas tree on a hospital inpatient ward.⁠

I’m glad to have answers

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
View page


Charlie is a white, plus size person, they are smiling and wearing a pink dress with cherries on it. They have green eyes with makeup on, short pastel colored hair, and sunglasses on top of their head. They are standing on the sidewalk with their purple rollator walker. They are outside surrounded by trees and bushes in the desert in the sunlight.

Being plus-size and LGBT was a physical barrier to treatment

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
View page


1000 individuals invited to enroll in HEDGE!

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


Funded Research Study Update: Prof. Marina Colombi

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


Teaching is what brings me the most joy

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
View page


I finally got some answers once I was looked at as a whole person

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
View page


I knew something was wrong despite my tests coming back normal

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
View page


My diagnosis was dismissed by my new doctor

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,
View page


Our voices need to be heard

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