September 25, is International Ataxia Awareness Day. Chances are you won’t have heard of ataxia as an illness in its own right, but you might have heard of it as a symptom of other disorders like MS. That’s why this September, charities are coming together to draw attention to the disease and reach out to sufferers around the world.
Like most people, I didn’t know what ataxia was until I was diagnosed with a rare form of episodic ataxia in May this year, one month before my 25th Birthday. I’ve learned since then that the ataxias are a group of rare degenerative neurological disorders, characterised by progressive symptoms that impact co-ordination, hearing, balance, vision, and speech.
It doesn’t sound much fun really – and it isn’t. But greater awareness might help someone else get diagnosed earlier than I was, so here’s how it happened for me.
Looking back, it’s clear that I showed some hallmarks of ataxia from a young age. Although I had no obvious developmental problems, I did suffer from from attacks of extreme vertigo with sickness, double vision, and muscle rigidity, that struck every 4 months for days at a time.
These attacks meant that I was seen by various doctors as a child, but their regularity is unusual – even for ataxia – and after years being treated by an incredible paediatric neurologist at the Sheffield Children’s Hospital, a firm diagnosis was never reached. Growing up, I learnt to accept them as an anomaly I’d always have to plan my life around, and even though they were distressing, they never impacted my life day-to-day.
Because of this, a year and a half ago I wasn’t at all worried about them. I’d just finished four years at the University of Sheffield, graduating with a BA in English Language & Literature and an MA in Broadcast Journalism. I’d also started working at a publishing company and a pub part-time, and was hoping to afford a solo six-month trip to India that I’d been quietly planning for years.
Then, just as I’d started to put some money aside, the first strange symptoms began to appear. The extreme tiredness I’d put down to doing too much at university became harder to ignore. Gradually, I noticed that my muscles were beginning to ache and a persistent ‘fogginess’ descended over my thoughts. A burning and tingling sensation down the left side of my face and in my hands slowly became the norm, along with severe muscle stiffness and weakness, agonizing headaches, and constant blurring in my left eye.
Happy New Year
By the time New Year came round I’d developed a persistent tremor in my left hand and experienced my first hemiplegic migraine. Although I know now that these migraines often occur with ataxia, all I knew then was that my left arm had suddenly become so weak I could hardly move it, and that when I tried to form a sentence my words became jumbled and my speech started to slur.
The doctors were worried I’d had a TIA – a mini stroke – but an MRI scan revealed no sign of one, and I was sent home. More months passed in this way, until one day in March when I woke up dizzy one morning, and I’ve been dizzy every day ever since.
On paper, these symptoms seem like I should have had a referral to a neurologist quickly. But in reality, anxiety, stress, and even hormone fluctuations can cause similar symptoms, and ataxia is so little understood that no-one made the link between the attacks I’d always suffered from, and the new symptoms I was struggling with.
It was only after a year of pushing my GP for a referral that I finally saw a neurologist in May this year. After so long spent without answers, he was able to tell me that I’d been suffering from multiple migraine variants and vestibular nerve damage, caused by the episodic ataxia I’d unknowingly had all my life.
Having a name for my illness is, in some ways, comforting, but no-one wants to be diagnosed with a progressive disease at the age of 24. For me though, the prognosis isn’t that bad. Episodic Ataxia Type 2 – the most likely cause of my symptoms – may account for less than 1% of cases, but it’s also only slowly progressive, and I do have some hope of improvement.
Even so, the last year has been a struggle, and many ataxia sufferers aren’t as lucky as I am. Earlier diagnosis and proper symptom management is vital in preserving an ataxia sufferer’s independence for as long as possible, and charities like Ataxia UK, who provide information, support, research funding, and advice for people coping with ataxia, are invaluable in helping sufferers to lead normal lives.
For now, I hope that with vestibular rehabilitation I’ll be able to manage my new symptoms for a long time – and I’m still hoping to get to India one day. For other sufferers of more serious forms though, far more support and awareness is needed.
You can learn more about Ataxia at the Ataxia UK website.