Living with epilepsy and learning to seize the day
This relatively common disorder remains largely misunderstood by the public, writes Tanya Sweeney
WHEN 25-year-old Katie Nolan started working, she had one notable decision to make; whether or not to disclose her epilepsy to her employers.
"Legally you don't have to disclose a condition but I thought it was more fair to," the Longford native explains. "Once I had a seizure in the staff room of one of my jobs."
It wasn't the first time Katie's epilepsy has affected her life: "When I was in school I had some great friends but I was bullied a lot by boys who said that because I had 15 seizures a day I was making it up for attention," she explains. "Also, one of the side effects of medication is weight gain, so I was teased for being fat. You then get stressed and upset about that, which worsens the condition."
Almost 37,000 Irish people have a form of epilepsy – a set of chronic neurological disorders often characterised by seizures. Simply put, seizures result from abnormal or excessive neuronal activity in the brain.
Such is its prevalence that more than €15bn is spent annually on the treatment of epilepsy in Europe, a financial burden comparable to lung and breast cancer combined.
And while health and science progressions may continue apace, public understanding of epilepsy remains at a curious standstill.
"Epilepsy is one of the most common neurological conditions, yet remains the most misunderstood," observes Peter Murphy, Deputy CEO of Epilepsy Ireland (www. epilepsy.ie). "The societal issues are often more troubling than seizures themselves. A recent Scottish survey revealed that six in 10 people with epilepsy said it had impact on their friends and family, while 54pc said it had affected sexual relations. In our own research, we asked those with epilepsy whether they had experienced stigma, and 52pc said they had."
Last week, an interesting statistic came to light at a European conference on epilepsy research: that more than half of young people questioned in a survey wouldn't date a person with epilepsy. The survey that spawned the statistic was conducted in 2002 but, according to Murphy, research done in 2003 and 2013 shows virtually no difference between then and now.
"I've heard anecdotal evidence of people getting dumped by boyfriends or girlfriends after disclosing their condition," notes Murphy. "Fortunately most people aren't going to treat you any differently if you disclose the condition after six months."
That's not to say that relationships can't be beset by problems. Lorraine Lally (27), a barrister from Galway, admits that one boyfriend got a black eye during one of her sleep seizures.
"I don't remember them but I woke up on the floor covered in blood," she recalls. "I'd bit my tongue. And when I gave my boyfriend a black eye, the good news was that he knew what to do.
"Additionally, women are concerned that, if they got pregnant, a seizure would cause a miscarriage or the medication would harm their baby," she notes.
Many epileptics note that partners react in one of two ways: they make light of the situation with incessant ribbing, or they treat them with kid gloves.
"With guys, there is that desire to protect, I guess," concedes Lorraine. "If they don't know what to do, you have to educate them."
According to Murphy, a move towards public understanding is happening at a glacial pace. Recent research by Epilepsy Ireland is quite telling: 19pc of respondents said they would not employ a person with epilepsy, while 17pc of the population think, or are unsure as to whether people with epilepsy are less intelligent as a result of their condition. Only 43pc of Irish people questioned would know what to do if they saw someone have a seizure.
High time, it would seem, to debunk some myths surrounding the disorder: "Some people think it's an intellectual disability, while 7pc think it's contagious," reveals Murphy.
What's more, not all seizures involved falling to the ground followed by jerking movements (a tonic clonic or grand mal seizure). In some cases, sufferers experience a petit mal seizure (characterised by an 'absence'), myoclonic (characterised by twitching muscles), clonic (large movements initiated by a reflex), and atonic seizures (which consist of a brief lapse in muscle tone).
"I've had different types of seizures but often I can be up on my feet within two minutes," explains Katie. "I hate the reaction, the fuss, people calling ambulances. I just want to get on with everything."
"In many cases a seizure is not a medical emergency and doesn't require an ambulance – if the seizure goes on for more than five minutes, that's when you call an ambulance," explains Murphy.
"But the majority of seizures run their course. The person will feel tired or disoriented, but will often be back in the room after two minutes. There's no need for anyone to do anything. You don't restrain them; you don't put something in their mouth. You stay with them and make sure they won't bang their head on a chair or desk. Afterwards, you reassure them and explain what's happened.
"There's also a mistaken belief that a person can swallow their tongue, but that's an old wives' tale."
Correspondingly, it's the old wives' tales that appear to have taken hold. In centuries past, epilepsy has been linked with demons and witchcraft, and has negative connotations in the Bible. Most people know better now, yet the stigma has stuck around.
"It's only recently that people with epilepsy have begun to experience normality," says Murphy. "Up until 1970, people with epilepsy weren't allowed to marry in the UK, and there had been forced sterilisation (imposed on epileptics) in some countries. There were also the dark old days when people were sent off to epilepsy colonies."
The reason that epilepsy remains shrouded in confusion is that so few people talk openly about it. Simply put, it's the fear of the unknown.
"With other conditions, people will accept that it's part of you, but with epilepsy, people can actually see it and have to deal with it.
"A person having a seizure in front of you can be a terrifying thing, and not knowing what to do makes some people embarrassed or nervous," notes Murphy. "If people were more open about it, and they saw it the way they see asthma or diabetes, people would be more encouraged to be open about it."
For the most part, most epileptics are able to live full and independent lives . . . albeit with a caveat or two. While they cannot fly a plane or drive a train, most are perfectly able to work, and each person's limitations should be individually assessed.
"Some employers feel they can't put that person under stress, but there's no reason why a person with epilepsy can't hold down a stressful job once they are managing their lifestyle," notes Murphy.
While 70pc of cases can be treated with medication, others need to resort to surgery in a bid to stay seizure-free.
"I have found that a low-GI diet has helped control my seizures, as I think they have found a link between blood sugar levels and seizures," explains Lorraine.
Just as the public have yet to fully understand the whys and wherefores of epilepsy, so too must the health profession continue to research the condition. With Barack Obama announcing a $3m brain/neuroscience research initiative, scientists are moving ever closer to finding answers.
And, at last week's European conference on epilepsy research, the subject of stigma and educational deficits was tackled head-on. A major initiative into assessing the number of people with epilepsy – as well as looking at ways of reducing those numbers – was also announced.
"It won't happen overnight but it's great to see brain research given more of a priority in EU funding," notes Murphy. "As for the stigma, it will be like cutting an iceberg with a chisel, but in time I'd love to see some simplified ads on TV. For instance, everyone now knows what to do in the event of someone having a stroke. It would be wonderful to be able to do something around that."
"My epilepsy isn't a state secret, but so many people see it as a sign of weakness," adds Lorraine. "The fact that I can rarely get away from it is the hardest thing about it. When you get the diagnosis first, you're preoccupied with the things you can't do. But I've found that once you open up and reach out, most people are like, 'go for it'.
"It's important to know that we're neither contagious, nor need to be constantly watched like a baby," surmises Katie. "Most of us just want to be independent. Most of us can be fine in our own houses doing our own thing . . . and we just want everyone else to realise that."
For more information, see www.epilepsy.ie