EDS awareness month 2016

It’s that time again folks!  If you’ve not been here long then here’s the gist of things: I have Ehlers Danlos Syndrome (EDS) which isn’t very well known and to help combat that, May has been designated as EDS awareness month.  Bloggers, EDSers, charities etc all put in a concerted effort to raise awareness and understanding.


Jargon: There are 6 types of EDS, I have the hypermobility type which used to be known as type 3.  Depending on who you belief, EDS hypermobility type is the same thing as HMS (hypermobility syndrome) or EDS is a worse version of HMS. I use them interchangeably and rarely bother adding hypermobility type.

I’m not going to rewrite the wheel but if you are only going to read one thing about EDS and me, make it my open letter.

If you’re feeling interested and want to know more about EDS, how it affects people on a day to day basis and things which help, try some of these posts:

  • A day in the life of me and EDS 2015 and 2016 – I’m not an expert, I’m a person living with EDS/HMS and my experiences will be different to other people’s but hopefully it’ll give you some sense of what having the condition means.  I’d also like to reassure people with EDS that I think it’s unusual to deteriorate quick as quickly as I have.
  • Eating and drinking with EDS – because not everything is as straightforward as it seems… see spilt drinks, being unable to hold a fork etc etc…
  • Stuff which makes my days a bit better – for me, this includes twitter and my friends (any kind of chronic illness seems to be a great barometer for figuring out who your true friends are)
  • Travelling with EDS – it is still possible to do things like travelling, they just require more planning and depending on how HMS/EDS affect you, they may require more support.  This post was written when I was using crutches and still able to dress myself.  I am desperately hoping that I’ll make it to New Zealand at some point and will be able to write an updated version which includes wheelchairs and carers.  If anyone has any tips about that, I’d love to hear from you!

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