Letters from my MP
Shortly after the general election I decided to write to my local MP, Sir Paul Beresford. I wanted to ask what plans the new government has for funding and encouraging research into Ehlers-Danlos Syndrome. I also wanted to highlight the importance of early diagnosis and appropriate treatment of EDS to avoid long term disability. I […]
The EDS International Registry – Update
Would you like to find a friend who knows exactly what it’s like to live with EDS? Well the Ehlers Danlos International Registry aims to help people do exactly that. ‘We want to facilitate the connection between one EDS sufferer and another, in hopes of helping people deal with their illness and the way it impacts their […]
EDS and Anaesthetics
There was an interesting discussion in the EDS-UK Men’s support Group on Facebook recently about local anaesthetics, and how they are less effective on people with EDS Hypermobility type. It’s a well known problem, but the reason they are less effective seems to be unknown and there’s currently no accepted method of managing the issue. […]
‘A Rough Guide to Hospital’
The Hypermobility Syndromes Association is a British charity which offers practical support and information for anyone with any of the hypermobility syndromes or people involved in their care. They publish a quarterly magazine called the ‘HMSA Journal’. I wrote an article for the ‘Have Your Say Section’ of the magazine which was published this week. I […]
EDS Awareness Month – UPDATE
May is Ehlers Danlos Syndrome Awareness Month, which is a worldwide promotion supported by all the EDS charities. This year EDNF (Ehlers Danlos National Foundation, a U.S. non-profit organisation) has launched a video contest for people with EDS to share their stories. Entries should start appearing soon on YouTube with the hashtag #EhlersDanlosStories and on […]