It all began in college in my sophomore year. I got a massage at the mall just to try it, and then I was hooked. It wasn’t just for relaxation purposes. I am only five feet tall, which means that I raise my shoulders and arch my tailbone a lot to type. At the end
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I have been diagnosed with hypermobility spectrum disorder (HSD) for two years now—and as an experienced genetic counselor, I didn’t know my constellation of symptoms equated to HSD. I am in my early forties, but looking back, my HSD story began in my teens. I developed stretch marks on my thighs and had pain and
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Welcome to a day in the life of hypermobile EDS (hEDS) and its comorbidities. My head starts thumping during my sleep and turns into a sudden ice pick sensation (migraine) 3-9 times a day, and sometimes persists for hours or days. The minute I wake up, I have ringing in my ears, I am dizzy,
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Ever since I was young, I was always “different”. I amused my friends and adults by contorting my body into weird shapes. The hyperextension in my arms, abnormally long fingers, and height, in particular, were things that people would often comment on. Starting around the time I was about 12 or 13, I started having
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Getting an Ehlers-Danlos syndrome diagnosis is an ongoing process that can raise more questions than answers. I had always been ‘flexible’ and had problems with my joints in childhood, but my flexibility was encouraged and any pain was brushed off by doctors as ‘growing pains.’ As a child, I briefly participated in dance and gymnastics
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I was only 3 when I discovered how bendy I was, and at the time I just thought it was funny. Around age 8 I became symptomatic with joint pain. My GP told me that ‘it’s just growing pains’, ‘it’s weak ankles’. I gave up and accepted the pain. At age 12 I started getting
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My childhood was a blur of activity. I was, in every sense of the word a tomboy, which for that time period meant a rough and tumble girl. I’m from a small town in Kansas, and my grandparents lived on acreage there. My happiest moments were spent feeding chickens, gathering eggs, caring for horses, picking
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EDS ECHO is tackling several key issues facing patients with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD): supporting clinicians in increasing their knowledge; helping clinicians network with each other to discuss care; increasing access to care by increasing the number experienced clinicians, and supporting community advocates in raising awareness of EDS and HSD.
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My greatest barrier with Ehlers-Danlos syndrome has been finding my own voice. Symptoms started as a young child with unbearable leg pain at night. Then, in high school, I began having many gastrointestinal issues. I still wanted to participate on my school’s cross country team; one day while running alone I lost consciousness. Once I
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The British Society for Rheumatology (BSR) published a statement this week, concluding that they are of the opinion that the ‘evidence base is insufficient to support the development of guidelines for hypermobility’. We are disappointed that the BSR has made this decision. We are also disappointed that the BSR never invited The Ehlers-Danlos Society and
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