Ehlers-Danlos in the news

12 March, 2020

EDS and coronavirus (COVID-19)

Updated 19 March 2020 It is understandable that people with EDS and associated health challenges are worried about their risk of contracting the new coronavirus which causes the illness COVID-19. As the virus is newly identified, there is very little known about how it affects people and there is no specific advice for people with […]

4 March, 2020

BSR statement on developing hypermobility guidelines

The British Society of Rheumatology has today issued a statement saying that it will not be developing guidelines on the diagnosis and management of hypermobility-related problems due to insufficient evidence to inform guidelines. The statement includes reference to the Ehlers-Danlos syndromes toolkit we developed in partnership with the Royal College of GPs (RCGP), released in […]

5 November, 2019

New research shows hEDS and HSD 10 times more common than previously thought

New research published today suggests hypermobile EDS (hEDS) and hypermobility spectrum disorder (HSD), previously known as joint hypermobility syndrome (JHS), are 10 times more common than previously thought. Researchers from Swansea and Cardiff universities looked at combined medical records from GP practices and hospital admissions in Wales over a period of 27 years, from 1990 […]

11 October, 2019

Ehlers-Danlos Support UK mentioned in parliamentary debate

Following Healthwatch Calderdale’s report into the experiences of adults with hypermobility syndromes published in July, the MP for Calder Valley, Craig Whittaker tabled a debate in parliament on Monday 7 October highlighting the findings of the report and calling for action. Mr Whittaker stressed that hypermobile EDS (hEDS) and hypermobility spectrum disorder (HSD) are specifically […]

8 August, 2019

Healthwatch reports on experiences of people with hEDS and HSD

Healthwatch Calderdale has published a report of the experiences of people with hypermobility-related disorders across the Yorkshire and Humber region. Two hundred and fifty people took part in the survey-based study. The report’s findings support our own evidence based on our members’ experiences – that people with hypermobility-related problems are facing huge difficulties in getting […]

17 May, 2019

New London-based rheumatology and hypermobility clinic for adults and children

Professors Rodney Grahame and Ian Chikanza are pleased to announce the inauguration of a new clinic to be established within the Harley Street Clinic (HCA Healthcare) at 16 Devonshire Street, London, W1G 7AF. The clinic is a new concept of care offering world-class rheumatology care for adults, children and adolescents together with the full panoply […]

26 April, 2019

Dr Alan Hakim sabbatical

Consultant rheumatologist Dr Alan Hakim announced yesterday that he will be taking a 12 month sabbatical from clinical work to focus on education, training new colleagues and research. As of now he is not accepting new patient referrals but will be seeing everyone already booked to see him between now and August. Please see Dr Hakim’s […]

20 November, 2018

Statement on the law regarding cannabis-based products for chronic pain

The following joint statement is from the HMSA, the Ehlers-Danlos Support UK and The Ehlers-Danlos Society on cannabis-based products, chronic pain, and hypermobility-related disorders and is regarding changes in the law in the United Kingdom. This statement is for people with chronic pain and hypermobility disorders such as the Ehlers-Danlos syndromes and hypermobility spectrum disorder (HSD). […]

29 May, 2018

First EDS toolkit launched for GPs

The Royal College of General Practitioners (RCGP) has launched an Ehlers-Danlos syndromes (EDS) toolkit for GPs and healthcare professionals. The toolkit, created in partnership with EDS UK and funded by the charity, aims to improve the recognition, response to and management of EDS in primary care. The toolkit sets out the latest thinking in EDS, including […]

30 June, 2017

I had to crowdfund for my wheelchair so I could work as a doctor

Junior doctor Hannah Barham-Brown used crowdfunding to raise money for a suitable wheelchair so she could continue her training after being diagnosed with Ehlers-Danlos syndrome. It took her just 24 hours to raise the £2000 needed for a fairly basic but lightweight chair. She says “Now, I’m the quickest doctor in the hospital – they’re always […]

23 June, 2017

“Evidence building for EDS patients with CCI needs to start somewhere”

ITV News this week covered the story of EDS UK member Melanie Hartshorn after she had surgery for the complication cranio-cervical instability (CCI)  in Barcelona. Melanie had to fundraise for the surgery after being denied it by the NHS. EDS UK’s Kay Julier has been speaking to ITV News about what needs to be done […]

22 June, 2017

EDS on BBC Asian Network radio

Mya Choudry, our Health and Helpline Advisor, has been busy raising awareness of EDS on BBC Asian Network radio. Mya talked about EDS affecting the South East Asian population and the apparent reluctance to seek help. She also said that, thanks to funding from The Sylvia Adams Trust, EDS UK is having information translated into […]

More News Articles

Charity news, patient stories, events, reearch & Ehlers-Danlos in the press