Tag Archive: vEDS

Our discovery of vEDS

Myself and my husband have our beautiful daughter, Effie. At one month old Effie started to vomit and sleep all day: we took her to the GP and hospital 17 times within the first 3 months of her life. One morning, 3am Effie woke up screaming, she had a seizure and turned stiff: we called […]
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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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I want to spare another family from this life altering trauma

My story is truly one of heartbreak and pain. I recently lost my 14 year old son to aortic rupture caused by vascular Ehlers-Danlos syndrome, and that’s how I received my diagnosis. By this time I did already have two siblings diagnosed with vEDS, so we already knew there was a possibility of having it. […]
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I am a surviving spouse – the love of my life had vEDS

Vascular EDS is relentless. Sometimes it’s subtle, but mostly it isn’t. I am a surviving spouse – the love of my life had this relentless disease. During that time my dear husband’s body was attacked by an invisible enemy. There were major events, a spontaneously ruptured spleen, gastric aneurysm (where he was an early recipient […]
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The day will come when all medical professionals know about vEDS

I’m 66 years old and have vascular Ehlers-Danlos syndrome. Anyone familiar with this EDS type understands how blessed I am as the median life expectancy is 48 years. My vEDS life began 22 years ago, although I didn’t know it at the time. On Christmas Eve in 1996 I began having abdominal pain around 6:00pm. […]
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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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Vascular EDS does not stop me from living life

By Lynley W. Hi, I’m Lynley, and I have vascular Ehlers-Danlos syndrome. I was born club-footed; my feet were almost completely turned around. Doctors told my parents that I would be in a wheelchair for all of my life. I am happy to say I am not in a wheelchair! I’ve had multiple surgeries and […]
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VASCULAR EDS: MAKING EACH DAY COUNT

For however long God gives me on this earth; I would like to make each day count. If I educate just one person a day or even a week, when my time here is over, my family will be able to say she made a difference in at least one person’s life.
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