Tag Archive: Men

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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cVEDS | People need to hear my husband’s story

My husband has Ehlers-Danlos syndrome. He was the typical case that wasn’t caught until he was older. When he was about 20, he swatted at a wasp and his arm dislocated. The surgeon that did the surgery knew there was something more going on because of the severity of the tips and tears. It was […]
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vEDS, you picked the wrong person

November 8, 2017, was the beginning of my journey with vascular Ehlers-Danlos syndrome. I label my event as an attack, because it was just that, but I survived the war this disease has started with me. My attack caused both of the arteries in my kidneys to dissect, along with a couple of aneuryms throughout […]
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The long road to diagnosing HSD

It has taken a long time for my family to be diagnosed with hypermobility spectrum disorder (HSD). We’ve been told different things by different geneticists, and we have symptoms that aren’t attributed to HSD. One of my brothers, my mother, and myself have also all been diagnosed with Hashimoto’s disease. It proves extremely difficult for […]
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If only people understood

I’m Spencer, I’m 16 years old, and I have hEDS. I wanted to share my story, because I know that there isn’t a lot of visibility for the men out there with EDS. My symptoms started when I was 6 years old. It started out as pain and instability in my ankles and knees, which was […]
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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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Which type do I have? Doctors don’t always agree

By Caleb H. In January of 2000, when I was 2-years-old I came down with an illness which, contrary to EDS, most of the world has enough familiarity with to despise: the unfortunately common, unpleasant, but benign wintertime stomach flu. And common, unpleasant, but benign is how it should have gone. But, ironically, this common […]
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ONE DAY AT A TIME

Today at age 39, I spend most my time just managing pain, looking for answers for a better quality of life and trying to figure out what to do with the rest of my life. EDS has taken so many things away that I truly enjoyed it’s hard to retrain the brain into finding new hobbies and things to enjoy. When every single moment of every day is painful it takes the joy out of even the little things in life.
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THE QUIET SIDE OF EDS

My name is Jimmy and I’m currently a freshman in college studying management of information systems. When most people look at me, it’s hard to tell that I struggle with what could be classified as an “invisible disorder.” And yet, as I’ve since discovered, EDS and my associated conditions are all the more real and important.
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