Tag Archive: cEDS

My awareness mission

My name is Alexander VanHouten. I have Ehlers-Danlos syndrome, and though living with pain and constant threat of injury every day is no walk in the park, I am thankful for the trajectory my life has taken because of this disease. When I was a child I was, like most young boys, a hyperactive, rambunctious […]
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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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Managing my insecurities

My name is Rachel and I have classical EDS (cEDS). I’ve never been open to anyone about my insecurities about having EDS. I’ve told others that I have it, and explained what it is in a very objective way, but I never dwelt deeper than that. Searching ‘EDS’ in Instagram was shocking to find so […]
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Learning how to adapt to life with cEDS

By Liz H. My daughter, Frances, was diagnosed with cEDS when she was almost 2 years old. We feel lucky that we were able to obtain a diagnosis so young, knowing that many EDS patients spend much of their lives trying to figure it out. It’s possible that we also would have been in the […]
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O que eu tenho a dizer a todas as Zebras é que sejam fortes e corajosas

Olá. Meu nome é Betuel Tiago. Tenho 24 anos e atualmente estou no estado de Santa Catarina mas sou do estado do Paraná no Brasil. Tenho Ehlers-Danlos síndrome subtipo Clássica. Possuo muitas cicatrizes em meu corpo, a maior parte deles aconteceram na infância e ficam marcas para vida toda. As vezes saem feridas em meus […]
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