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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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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UPDATE: November 11, 2019 Last week a paper by Demmler et al. was published looking at patient records from healthcare service databases in Wales over 27 years up to 2017. The study reported that either the diagnosis Ehlers-Danlos syndrome (EDS) or Joint Hypermobility Syndrome (JHS) was found in the healthcare General Practice or Hospital records
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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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A recent Twitter discussion about this area of health began with commentary about a chapter that was written in 2014 and published in 2015. The tweet linked The Ehlers-Danlos Society to this chapter, but we wish to be clear that we had no part in writing it, and that we do not intend to pass
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Response to British Society for Rheumatology “Guidance for Management of Symptomatic Hypermobility in Children and Young People – A Guide for Professionals managing Children and Young People with this condition” June 2019 In June 2019 the British Society for Rheumatology published an update of its 2013 document entitled “Guidance for Management of Symptomatic Hypermobility in
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The Ehlers-Danlos Society was proud to present Jameela Jamil, British actor and activist, with the Patient Advocate of The Year award tonight, at its Global Learning Conference in Nashville. Accepting the award via video link, Jameela thanked The Ehlers-Danlos Society for recognizing her with the award, and for welcoming her into their community: “I am
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