Welcome to ‘A Reluctant Contortionist’, a blog about being too bendy.
So why am I starting a blog? For a long time now I’ve wanted to do something to help the cause of Ehlers Danlos Syndrome (EDS). But what exactly? I’m not smart enough to find a cure. I have EDS so I can’t run a marathon or jump out of a plane. I can bend my joints into endless weird positions, but who would sponsor me to do that?
So what’s left? Well along with anything Star Wars, one of many nerdy hobbies of mine is searching for the latest EDS research online. A while ago I was telling a friend about a medical paper I’d found, I suspect I was boring him a little, and he suggested I start my own website (so it’s all his fault if this site bombs). There’s a few reasons why I liked the idea…
My Story. – Finding out what’s wrong with me and how to manage it, was a long, painful and bewildering process, with numerous costly mistakes made along the way. I can’t change the past, but by sharing my story it might help someone else get diagnosed faster, or avoid some of the pitfalls I limped blindly into.
Lack of awareness. – Apart from doctors and avid viewers of Coronation Street, it’s very rare to meet anyone who has heard of EDS. If someone is brave enough to ask what’s wrong with me, when I tell them they just look blank. If I try to explain the condition they look blank and confused and probably regret asking. It’s not that I’m after gushing sympathy or a medal, but it means on top of living with a disabling condition you have to frequently explain the symptoms to people, and deal with a lack of understanding, sometimes scepticism, frequent tactless comments, and the odd inquisition (on second thought, a medal would be nice). Lack of awareness is also one of the reasons EDS is an under-diagnosed condition.
There’s no cure for EDS. – The condition was first observed by Hippocrates in 400BC. But in the 2414 years that have passed since doctors haven’t found a single treatment that improves it. There are numerous options that help manage the symptoms of it: pain killers, physiotherapy, splints, compression bandages, more pain killers. But nothing that improves the tissue weakness itself.
One of the reasons there’s no treatment for EDS is the lack of a ‘market’. Drug companies aren’t the cuddly altruistic creatures they’d like you to think they are, they only research treatments for common conditions where there’s lots of profit to be made. This is frustrating as it puts a price on the quality of people’s lives. But also because EDS is an under diagnosed condition, so the actual size of the charmlessly named ‘market’ isn’t even known.
However… if awareness levels could increase, diagnosis levels might increase, and we all made a lot of noise about what a large and grateful ‘market’ we are, then who knows? – You’re probably thinking that’s a very optimistic, possibly delusional, pipe dream and you’re probably right. But I’ve had two decades to think about it and it’s the best plan I’ve come up with. So I guess this blog is my contribution to raising awareness and making some noise. You could help by mailing it to a few friends please.
So what am I going to blog about? Well, I’m not qualified to give medical advice, I’ve never been big on sharing my feelings and my life isn’t very eventful. But I do have 20 years experience of living with EDS, so I must have a few useful tips to pass on. I’ll also gladly share any exciting EDS research I come across. Plus maybe, if it’s not too dull, the odd snippet from my own struggle with EDS.
I’m going to try running this site for a year, then decide if I’ve managed to achieve anything. If no one in the world is interested I’ll just turn this into a Star Wars fan site. The internet always needs more of them.
Thanks for reading, Ceri – ‘A Reluctant Contortionist’.