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 […]
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 […]
I thought Buzzfeed only made trivial lists ranking celebrities cellulite etc. but apparently not. I just found their list of random facts about EDS, and it’s well researched and very good. I could have saved myself all the trouble of starting a blog and just put the link on my Facebook page! I have Hypermobility type […]
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 […]