Living with Chiari Malformation and Syringomyelia

Hellooo, it’s the Chiari Malformation Syringomyelia Awareness month, which is the brain condition I was born with and the reason I started my business. So, I think it seems quite appropriate to tell you a bit more about my naughty little head. But if I’m completely honest it’s actually the American awareness month, I accidentally missed the UK’s this year (blame it on my brain)!

 The original watercolour brain painting.

The original watercolour brain painting.

So anyway, as I said before I was born with Chiari Malformation and Syringomyelia, but I didn’t show any symptoms until I was about 10 years old. I went back and forth to the doctors with complaints of headaches and dizziness for years and then eventually when I was 21, I was diagnosed with Chiari Malformation Syringomyelia, which is a rare, invisible and incurable illness. The Chiari is where the lower part of the brain pushes down onto the spinal canal and the Syringomyelia is a bubble on the spine. Which causes lots of different types of headaches, neck pains, dizziness, numbness of body parts, fatigue and feeling spaced out all of the time.

 An illustration I did last year to try and show how the pressure headaches feel. 

An illustration I did last year to try and show how the pressure headaches feel. 

For a few years the neurologist tried to control it with different medications, but eventually the syringomyelia got worse and there was no alternative but to have the operation where they removed part of my lower skull to release the pressure and make more room for the brain. Luckily for me the surgery was a success and the bubble on my spine disappeared, but unfortunately the surgery wasn’t actually to cure the symptoms. It was to prevent it from getting worse and potentially making me brain dead or paralysed depending what direction the bubble moved. Therefore, I still suffer with daily with the headaches, dizziness, lack of energy and some days I struggle to get out of bed but compared to what could have happened if the bubble decided to move I’m actually very lucky.

 

 I was featured last year in the Ann Conroy Trust magazine, which is all about Chiari Malformation and Syringomyelia

I was featured last year in the Ann Conroy Trust magazine, which is all about Chiari Malformation and Syringomyelia

Even though I try to look at the positives, it has had a massive impact on my life, simple things like concentrating or having a long conversation really hurts my head and can wipe me out for the rest of the day, so it was quite clear a normal career wasn’t going to be an option. Especially one in a fast-paced environment such as the fashion industry, which I was hoping to go into, so I could put my degree to good use. But that wasn’t meant to be and eventually I decided to make what was just a hobby and a way of making a few extra pennies painting peoples pets, into my own little business. I set up my own website, expanded my range of custom paintings and products and also created a small collection of ready to buy greetings cards and prints. I have officially been self-employed for nearly two years now and I’m super excited about how it’s all going. I’ve still got a long, long way to go, but hopefully one day ‘ll have a little business to be proud of and something good will have come out of it all and prove everything really does happen for a reason.

P.S. I’m also trying to raise a few pennies for the Ann Conroy Trust which is a small, voluntary run charity, based in the UK, that supports people with Chiari Malformation and Syringomyelia and raises much needed funds to do more research into the condition. These Chiari Malformation and Syringomyelia prints are available on my website and Etsy shop (for anyone not living in the UK) and 50% of profits will be going to the charity.

 The Chiari Malformation and Syringomyelia art print.

The Chiari Malformation and Syringomyelia art print.

Thank you for reading and if you know someone or have the condition yourself feel free to get in touch, I’m more than happy to talk about it,

Carla :-)