Hypermobility Syndromes Awareness Week

As Hypermobility Syndromes Awareness Week starts tomorrow, I thought I’d do a bit of a round up of, what I think, are some of my useful posts about it.

Hypermobility Syndromes (HMS) includes Ehlers Danlos Syndrome (EDS) although various professionals argue about it and some say it’s the same thing and some say it’s different… For all intents and purposes I use them interchangeably.

  • EDS Awareness Month: An Open Letter – this is a bit of an intro to EDS/HMS and I think it’s a helpful place to start if someone close to you has been diagnosed.
  • A day in the life of me and EDS – 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.
  • Eating and drinking with EDS – because not everything is as straightforward as it seems… see split drinks, being unable to hold a fork etc etc…

For balance, because that all sounds a bit doom and gloom…

  • 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!

Overall, throughout my journey with EDS/HMS, one of the things I’ve found most helpful is other people and their experiences.  I remember a day fairly early on when I asked twitter for advice about bottle openers and I was overwhelmed with kind and supportive suggestions.  If I hadn’t had twitter, I’d have ended up trying lots of different products until I got to the ones I find best.  It seems a trivial example but knowing you can tap into that kind of support from people who really understand what you’re going through is so important.  Whether you find that space on twitter, facebook, online forums or face to face groups, do try to find someone who really does get it.

Useful links

HMSA – lots of helpful information, an online forum, active social media and regional meet ups

EDS-UK – also has lots of helpful information, an online forum, active social media and regional meet ups

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