Tag Archive: EDS

Dear Warriors…..

Life has this funny way of telling you things you can and can’t do, over and over again. As a child, we knew something was “off” with the way I acted, walked, and did other activities, but we weren’t quite yet at a stage where we could pin point what it was. As I began […]
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My journey with EDS and Chiari

“You just have to learn to live with the headaches.” The doctor looked at me with a complete lack of interest, clearly not caring about what that sentence might mean for a 20-something trying to adjust to adulthood as a firefighter/paramedic. I had spent months trying to ignore the pain, overcome the balance problems, and […]
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Response to British Society for Rheumatology

Response to British Society for Rheumatology “Guidance for Management of Symptomatic Hypermobility in Children and Young People – A Guide for Professionals managing Children and Young People with this condition” June 2019 In June 2019 the British Society for Rheumatology published an update of its 2013 document entitled “Guidance for Management of Symptomatic Hypermobility in […]
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My pain management journey

Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, I […]
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While there is life, there is hope! 

My story is like most with EDS. As a young child, I heard “it’s just growing pains” multiple times. As a teenager, my immune system dipped and infection wreaked havoc on my body. It wasn’t until a virus came a few years later that left permanent damage. I was diagnosed with hypermobile EDS (hEDS) in […]
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My kEDS-FKBP14 diagnosis changed my life

After 24 years of searching, countless genetic tests and doctor appointments, I was given my diagnosis of  kyphoscoliotic Ehlers-Danlos syndrome-FKBP14 variant (kEDS-FKBP14). That day, I not only got a name for the condition that plays such an immense role in my life, but I got a tool: I got a name, a word, to help […]
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Thank You Nashville!

A huge thank you to all of you who attended our Global Learning Conference in Nashville, either in person or virtually via our live stream! This year’s conference was our biggest conference yet with a record number of over 850 attendees, 130 medical professionals, and for the first time, over 3,200 people watching via live-stream from […]
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Jameela Jamil Presented With The Ehlers-Danlos Society Patient Advocate Award

The Ehlers-Danlos Society was proud to present Jameela Jamil, British actor and activist, with the Patient Advocate of The Year award tonight, at its Global Learning Conference in Nashville.  Accepting the award via video link, Jameela thanked The Ehlers-Danlos Society for recognizing her with the award, and for welcoming her into their community: “I am […]
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