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 […]
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 […]
There are a number of side effects of having Ehlers Danlos Syndrome: grumpiness, laziness, cynicism towards the entire medical establishment, and also unfortunately weak bones. EDS causes joint pain… which makes it hard to exercise… and inactivity over a long period can cause your bones to waste and get weaker. I’ve had joint problems for […]
Tonight at 11pm on the Community channel you can see ‘Issues With My Tissues’ a documentary which follows the incredibly brave journey of Lara Bloom, an Ehlers Danlos Syndrome Hypermobility type sufferer, as she attempts to complete the London Marathon. The program also features other people with EDS and their families discussing the many varied problems they […]