Tag Archive: hypermobility spectrum disorder

I went through the same diagnostic odyssey as my patients

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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My day to day with hEDS

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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Sophia wears a red dress and is standing in front of a large hedge. She has a red bow on her head and is holding some red tulle

Finally having a name for my issues gave me so much relief

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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Leah sits on her grass lawn

Patient advocacy shouldn’t mean having to fight for diagnosis

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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Rhonda's story

I’m a wife, mom, and author

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 celebrates its first anniversary

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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Being believed helped me to acknowledge that my pain is real

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 Ehlers-Danlos Society responds to BSR statement on hypermobility guidelines

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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The Ehlers-Danlos Society 2020 Research Grant Program

The Ehlers-Danlos Society is pleased to share with you our Research Grant program for 2020. We will announce each grant round over the course of the year but have summarised below the opening dates for your information. Further details will be provided with the online application process with each respective round.  We aspire to offer
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