Tag Archive: hEDS

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
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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
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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
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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
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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
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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,
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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
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Kayla smiles at the camera

My invisible illness

After twelve years, I have finally received the answer I’ve so desperately been searching for. My name is Kayla, I am 19 years old and I have hypermobile Ehlers-Danlos syndrome. For most of my life, I have pushed through lots of widespread joint pain and inflammation while thinking this was normal. Beginning at eight years
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Carin holding ice above her head in the water

Ice baths and cold river swimming

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,
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