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.
2 thoughts on “Being Mutant”
Dear Polly, Thank you for this useful piece. I had never heard of EDS, or Spoon Theory. I wish you all the best. Incidentally, I think there is a mistake in the year cited in the first line: October 2015 has not happened yet.
XX Gráinne Tobin
Date: Sun, 23 Aug 2015 17:30:27 +0000 To: firstname.lastname@example.org
Thanks Gráinne, and yes, you’re quite right about the date – getting ahead of myself as usual! Thank goodness the internet is editable 😉