Tag Archive: hypermobility spectrum disorder
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 […] View page
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 […] View page
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 […] View page
In the summer of 2019 it was announced that there were changes to codes in the ICD-10 directory. We wanted to update our community with what that means going forward. The ICD is owned by the World Health Organisation (WHO). The 5th edition of ICD-10 was published by the WHO in 2016. Many countries use […] View page
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 […] View page
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 […] View page
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 […] View page
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 […] View page
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 […] View page
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 […] View page
