Recent surveys suggest that only 10% of people know what ataxia is, my vision is to change this statistic.
Hi, I am Myles, a 27 year old male from Somerset who has Friedreich’s ataxia (FA). I know what you’re thinking, “what the **** is that?” and don’t worry, you’re not the only one; my cardiologist, local GP & nurses didn’t know either.
I was 21 when diagnosed, had just finished my law degree and started a masters in commercial law. The world was at my feet, some might say. I was actually hoping for a diagnosis of dyspraxia – a medical term for being clumsy and I desperately wanted to get out of tea making duty when starting at a law firm. I never could carry a full mug of tea without bloody spilling it.
FA is unfortunately one of the less delightful ailments to be diagnosed with. I’m not sure about you, but being diagnosed with a life shortening, degenerative, neuro-muscular, incurable disease that leads to difficulties in motor skills, speaking, scoliosis and development of heart disease (just to name a few) wasn’t in my life plans; but, there we are.
As you can imagine my head wasn’t with my studies, so I made the career changing decision to just get a factory job, earn some money and do the things I wanted to - whilst I could still do it. My first and foremost priority was making sure my siblings and their children were unaffected; luckily (or unluckily) it was just me in my family.
I am 27 now, I have been fortunate travelled some great places, including the Caribbean, Miami, Vegas, LA, Thailand and have more to visit. This would not have been possible without the support group of my friends, family and partner.
I am still relatively independent, I walk without an aid, albeit with a noticeable disturbed gait, I slur at times and have disjointed movements. I know this will continue to worsen, but it could be worse, right?
Support And Awareness
Awareness and support are so important for FA and other similar conditions. Ignorance leads to a confidence reducing feeling.
So to the people who stare at me in the street who think I am drunk, I’m not. To the doormen who won’t let me in nightclubs or entertain an explanation because they think I am incoherently drunk, I’m not. To the people that say “what’s a matter with him”, I’m fine actually, I’m just disabled.
Oh, and the people that talk to me like I’m thick, FA doesn’t affect my cognitive function.
A special thanks to my partner Beth, who says “a condition won’t stop us from being in a happy relationship”. My parents who struggle with the concept they’ve given me the disease and as parents this is one thing they can’t make ‘go away’.
Finally, to my friends who just take the piss out of me, because as Ricky Gervais recently said “being able to find humour in something bad makes you bullet proof”.
To the readers of this article, welcome to the 10% club.
Author: Myles Gratton