News and events

22 September, 2017

NICE guidelines for chronic fatigue syndrome/ME to be updated

Some types of EDS are often misdiagnosed as chronic fatigue syndrome/myalgic encephalomyelitis (ME). EDS UK recently submitted comments on the NICE guidelines for chronic fatigue syndrome/ME as NICE had decided there was no new evidence to warrant an update (the guidelines were written in 2007). As a result of the new information from EDS UK and […]

31 August, 2017

Fundraiser of the Month – August 2017 – Philip Evans

Philip Evans and 6 of his friends climbed Mount Kilimanjaro in August to raise money and awareness for Ehlers-Danlos syndrome. This fund was inspired by a close friend, Lucy Stafford, being diagnosed with EDS and hearing about the tough time she has had with intestinal failure. The treatment for her condition is essentially non-existent and Doctors […]

30 August, 2017

Accessing insurance with a genetic condition

Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Genetic Alliance UK regularly receives telephone calls and emails from people affected by genetic conditions who are finding it difficult or impossible to access appropriate or affordable insurance cover. Many patients are not aware what insurance companies are […]

30 August, 2017

Management and wellbeing conference 2017

There are still tickets available for the Management and Wellbeing Conference 2017, being held by EDS UK and the HMSA on Saturday September 30th and Sunday October 1st at Chesford Grange Hotel, Warwick. Tickets can be purchased here. The aim of the conference is to provide members with practical health and wellbeing advice to manage […]

31 July, 2017

Fundraiser of the Month – July 2017 – Doug Stanway

Doug Stanway did the London to Paris Bike ride and fundraised an incredible £6,046! With more money still coming in! It was a superb and very moving event on 2 different levels. Firstly it made me reflect on what my daughter and our whole family have been through it the last 4 years as Evie […]

13 July, 2017

Transport for London launches new map for anxiety sufferers

Transport for London (TFL) has launched a new map showing where there are tunnels on their network. The map is designed to help people who feel uncomfortable or stressful using the Underground network, showing them routes they can take to avoid areas with large stretches of tunnels. There are 270 stations on the Tube network, […]

30 June, 2017

Fundraiser of the Month – June 2017 – Danny and James

So we completed the 100 holes in 13 hours with a few stops along the was completely smashing our expected time but 3 and a half hours 🙂 so happy to have competed the challenge i on first look we have managed to raise over £4000 for eds support. Thank everyone how has helped organise […]

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 […]

23 June, 2017

Medically unexplained symptoms or EDS?

EDS UK’s Primary Care Advisor Dr. Emma Reinhold had a letter published in The British Journal of General Practice this week highlighting the frequent diagnosis of ‘medically unexplained symptoms’ for people with EDS and related conditions. She called on GPs to educate themselves about how these conditions present. Dr. Reinhold’s letter is the Editor’s Choice […]

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