Tag Archive: Diagnosis Journey

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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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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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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My HSD diagnosis made me feel more hopeful than ever

It all started in my last year of high school. I had suffered from headaches and migraines my whole life, but when I was 17 I got a headache that wouldn’t disappear. I went to doctors, physiotherapists and dentists: they treated my with acupunture and tried to pull my teeth out. The first tooth split […]
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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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My 30 year journey to a pEDS diagnosis

I have periodontal Ehlers-Danlos syndrome (pEDS). It took 30 years to get that diagnosis. I had good dental care growing up, but had early-onset periodontal disease with bleeding and receding gum tissue. At 24, I lost a lower front tooth. Despite attempts to surgically repair the surrounding tissue to try to save the tooth, my […]
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I wish someone had connected the dots sooner

My first symptoms of hypermobility spectrum disorder (HSD) were simple and seemingly harmless. I was super bendy. I could do all sorts of contortions and party tricks. As I got older however, each year came with more problems. By age 10 I was having chronic nausea, and by age 11, my first symptoms of Postural […]
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One Society, A Home For All

Many around the world face a diagnostic odyssey: years, sometimes lifetimes, fighting for recognition, diagnosis, and care. The Ehlers-Danlos Society is working towards a time when geography and wealth no longer determine your quality of life. Education is needed to advance early diagnosis and intervention—and post-diagnosis, patients urgently need support and guidance. We want to […]
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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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