Tag Archive: hypermobility spectrum disorder

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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The Ehlers-Danlos Society Receives $1 Million Gift To Advance Research

NYC, USA — The Ehlers-Danlos Society is delighted to announce an anonymous gift of $1 million US dollars to advance research within the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions.  This generous donation sets the foundation for vital research, and has enabled The Ehlers-Danlos Society, in conjunction with The EDS […]
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The Ehlers-Danlos Society Center opens at Indiana University Health

INDIANAPOLIS, USA — The Ehlers-Danlos Society is pleased to announce the opening of The Ehlers-Danlos Society Center at IU Health, committed to advancing research, education, and patient care for those living with the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. A Center for Change The Ehlers-Danlos Society has donated $500,000 […]
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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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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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