Making EDS visible

Lacerating the inside of my throat with a carrot ‘stick’ is not an experience I wish to repeat! That happened as a result of having Ehlers-Danlos Syndrome Hypermobility type (also known as EDS Type 3 Hypermobility). EDS is a genetic connective tissue condition. There are 7 different types of EDS. Some things I experience as a result: joints over-extending much further than normal, often leading to dislocations and subluxations; joint pain and overwhelming, constant fatigue; slow healing; scoliosis; and easy bruising. Local anaesthetic does not work, unless I have 3 doses of it! There are lots of other aspects but these are the ones that spring to mind first. As a teenager, before formal diagnosis at 15, I had 5 teeth removed due to overcrowding and it was agonising as I had the ‘normal’ amount of anaesthetic. Even now, years later, when I say to surgeons and consultants that I need much more local anaesthetic, they don’t always believe me, until I scream that I can feel everything and need more NOW!

I think EDS is more of an invisible condition than rheumatoid arthritis, as fewer people have heard of it or the implications of having it. I hope that 2014 will be the year that more people learn about EDS due to increased awareness. Although I don’t watch it, I know that Cherylee Houston, an actress on mainstream TV soap Coronation Street, not only has EDS Hypermobility type in real life, but so does her character. This is a great way to raise awareness and show that EDS, or any other condition, doesn’t have to define who you are, and that you can lead a fulfilling life with the right treatment and support from family and friends. I’m on a bit of a mission to raise awareness of EDS (and RA) this year, just talking about it when I get the chance (but not going on about it, as I know there’s a difference!). As I’ve said before, I also want to spend less time in hospital and instead do more art, play the ukulele, see friends more often, meet new people, do a 5k charity run (or maybe walk!) and experience new things. What I’m really looking forward to is travelling again once my RA stabilises (if the Humira does its job). I’d love to go to Vienna even just for a few days. And then after a city break, the next step will be a whole week abroad, which I haven’t done since September 2011. I’m not getting ahead of myself, I’m giving myself something to look forward to, whether it happens this year or next.

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6 thoughts on “Making EDS visible

  1. I wish you health to carry out your travels, best of luck 🙂 I have followed your blog as I am new to blogging and finding so much advice and experience relating to EDS in blogs such as yours and I hope they will help me prepare for the future 🙂 I’m 22 and diagnosed 2012 and still trying to live life to the full (as much as my body allows) thankyou!

    • Thank you 🙂 and for your lovely comments! I remember finding it a bit strange when I first had a formal diagnosis of EDS (it took me a while to get used to it) but at the same time it was a relief to know what it was. And yes, I think despite things like the extreme fatigue it is definitely possible to live life to the full – for me it’s all about pacing. For example when it comes to travel, I have to have afternoon naps so I can keep going! I’ve learnt that’s normal for me and there’s nothing wrong with it. All the best and thanks for following 🙂

      • Thank you for replying! That’s so interesting you mention about naps! I nap all the time and anywhere! I’ve began exercise more recently and seem to be napping less and moving into a deeper sleep quicker at night which is nice 🙂

  2. I think i’ts so important that you have set some positive goals for yourself. If you ever read “Racing in the Rain”, you’ll remember one of the lines – “The car goes where the eyes go.” You’ve set your sights on making improvements. Step by step, breath by breath, heart beat by heart beat – you’ll get there.

  3. Pingback: EDS Awareness Month | 30somethingwitharthritis

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