Tag Archive: hypermobile EDS

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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Jack Orman holding a skateboard

I don’t know where I would be without skateboarding

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
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The second one is of me sitting on a peak when we had gone hiking in Denali national park. I have hope that I will be able to get out of the wheelchair and hike again one day. August 2018

Make every moment count

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
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Jennifer and her service dog

Why I ROAR!

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
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Dana

My pain management journey

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
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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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Alyssa on her wedding day leaned over and kissing her husband

My EDS is always two steps forward and five steps back

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.  
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