One Year of ‘A Reluctant Contortionist’!
In my very first post ‘Hello World’ I said that I would write this blog for a year, but if I wasn’t getting much interest I would then turn it into a Star Wars fan site. Well, with a hotly anticipated new Star Wars film just 3 weeks away, a fan site is very tempting! […]
‘Extra Time’
The charity Ehlers Danlos Support UK publish a magazine titled ‘Fragile Links’. I wanted to write something for the magazine to share some of my experiences living with EDS, (and to publicise my blog a little 🙂 ). My story spans over two decades, which would have made for a very long article. So I […]
Two Years of Parenteral Nutrition
Two years ago this month I weighed just 7 stone and 1 pound. I’m over six foot tall so I had a waistline like a dehydrated supermodel. I’d been unable to eat normal food for some time, so I was being fed liquid food through a tube into my stomach, called a PEG. I found […]
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 […]
