30th June is Arthrogryposis Awareness Day and Abi, one of the Steering Group members, tells us more about this mouthful of a word:
Your first question is probably how do I say that? Followed closely by what is that…?
You say it like it’s written…. Ar – thro – gry -po – sis … see, not so difficult after all!
And what is it? The simple translation is curved joints.
If you want to give it the full name, it’s Arthrogryposis Multiplex Congenita, but that’s a bit of a mouthful! More technically it means some of the muscles in our body haven’t developed properly before birth, so these joints don’t form quite like “normal” and often have reduced movement. It has to affect more than one joint, in different parts of the body. We are all affected differently, so no two of us are alike!
We’re a pretty rare bunch, with 1 in 3000 live births having the condition. Many medical professionals haven’t heard of the condition. Of the people with Arthrogryposis, about one third have a genetic form, one third have another condition which causes Arthrogryposis, and a third have a sporadic form that no one knows what causes it (amypoplasia). I fit into the last group, so I’m 1 in 10,000!
There’s no cure for arthrogryposis, but with a mixture of surgery, splinting and physio, people are able to gain useful movement and ways of getting around.
You might be thinking how terrible this all is, but it’s not all bad…. we’ve known nothing else, so having the conditions is normal for us. We a pretty happy go lucky bunch and generally those with arthrogryposis are very determined individuals. Never tell someone with arthrogryposis they can’t do something, as they’ll just prove you wrong (my friends and family will testify to this)!
I’m mostly affected in my arms- I have very little movement in my shoulders, elbows, wrists and hands. But this doesn’t stop me working, living independently, driving a car, swimming, sailing, baking cakes and all sorts of other things! Some things I might need a little help with, take a bit longer or do in a different way, but not much stops me!
It can be a pretty terrifying thing having a baby with arthrogryposis- they can have arms and legs which look a bit different, and there’s so many questions about their future. Wearing blue on Arthrogryposis Awareness Day aims to make more people aware of the condition, to talk about it and hopefully a quicker diagnosis will happen for babies with the condition.