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! […]
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 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 […]
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 […]
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 […]