In October 2014 I was diagnosed with Ehlers Danlos Syndrome (EDS), a connective tissue disorder caused by a mutation in one or several of the genes responsible for collagen production.
Unless you’re reading this because you or a friend or family member have EDS, it’s likely that you’ve never heard of it before. You’re not alone. The only people I talk to who know about it are those who know someone else with it. This needs to change so that fewer people have to suffer in ignorance, without diagnosis, treatment or understanding from their communities.
So I’ve started this new strand on my website, Being Mutant, to share some of my experiences and knowledge of EDS, in the hope of chipping away – in my tiny way – at this vast damaging ignorance. You can find more information on EDS at the Being Mutant page (just click on the link in the menu at the top of each page) and I”ll keep adding to it as I go through the process of finding out more about the condition in general, as well as my personal experiences of it.