More than 250,000 Australians are living with epilepsy. Lennox Head’s Katie Gatland sat down with the Echo to help everyone better understand what Purple Day and epilepsy awareness is all about.
Having moved to Australia from New Zealand, along with her family, she says things are better here for those with this form of disability than across the Tasman, but there are still misunderstandings about the condition, and stigma in some cases. Ms Gatland said finding employment is difficult, the necessary drugs for treatment are expensive, and education brings special challenges.
She’s currently doing an Introductory Animal Care Course at Wollongbar TAFE, and does volunteering locally for animal wildlife organisations, hoping to find work in that field.
So when did the epilepsy start? ‘I was born with it,’ said Ms Gatland, ‘and I’ve had seizures since birth.’ She said doctors have given her various drugs for the condition, some of which made the seizures worse.
‘Eventually I got the right drug, and now they stabilise my seizures – I don’t have them any more, unless I get too stressed!’ This is a big improvement from her regular seizures of the past.
‘I know it sounds horrible, but epilepsy took my life until I was like 19 or 20. That’s when I finally got my life together – I can control my seizures and live again.’
Every epileptic is different
Katie Gatland said she doesn’t remember high school because of the treatment drugs, the tiredness from the side effects and the seizures themselves.
‘It was horrible, and I’m not the only one. There’s so many epileptics out there, young kids, and they’re going through what I’ve gone through.
‘I know how it feels, but every epileptic is different. It’s like, everybody’s mind is different. So we have different seizures, and we react to them in different ways.’
The electrical disturbance in the brain associated with epilepsy can manifest in various ways, ranging from the classic grand mal form to milder versions where people stay conscious.
‘Yes, some people have fits, they fall on the ground, and they do the shaking. Myself, I just stare at a wall for five minutes or a couple of seconds. And you wouldn’t even know I had a seizure. I just freeze when I’m doing something.
‘When I have a seizure, my parents know they can’t touch me, or talk to me, until it just goes away. Then when I wake up from the seizure itself, I’m tired, confused about where I am, confused about why I’m here. It’s like waking up in the morning.’
Do you ever get used to it?
‘These days, I just think of epilepsy as part of my life,’ said Ms Gatland. ‘There’s nothing I can do about it. Just make sure my stress levels are down, take my medicine on time, and try to exercise at the gym. That’s good for mental health. But if I am completely stressed, I’ll have a seizure. There’s nothing I can do about it.’
She says the seizure prevention medicine she needs is free in New Zealand, but expensive in Australia, and not subsidised under the PBS. ‘I would love to have that change!’
Ms Gatland says Wollongbar TAFE have been fantastic, and have assisted with her learning and assessment process.
‘Because I have learning disabilities, I can’t read fast. Sometimes, I tend to ask too many questions in class to the teacher because I don’t understand what’s going on, or I’m nervous.
‘The teachers here, they organise your schedule to suit the individual person. I’ve never seen that before. It was just amazing. They check you’re okay. I had a seizure once and I decided to stay because I was determined not to leave. They said if it happens again, I want you to just go home, and I’ll give you the notes next Tuesday.’
She says people look at you differently after a seizure, and it can be difficult to explain what’s going on. As a teenager, she wore a bracelet in case of emergency, which she no longer needs, but is still unable to drive in case she has a seizure. Luckily she has a supportive family in Lennox Head.
So what else do people need to know about epilepsy?
‘That we are different. But who isn’t? We sometimes have other symptoms like anxiety, and depression and stuff like that. It’s all about the brain. Epilepsy is more than one thing.
‘It’s a lifelong condition, but it can be controlled with drugs. Some people have tried surgery, but it doesn’t really work.’
So what should people do if they come across someone having an epileptic seizure? ‘No matter what the seizure is, just leave them,’ said Katie Gatland. ‘The number one rule is do not touch someone. If an epileptic is having a seizure, you do not touch them, it affects the brain and can cause brain damage.
‘If the person is somewhere unsafe, the best way to protect them is to move things around them. Make sure that nothing can fall on them.
‘Afterwards, I’m always thirsty. Every time I have a seizure, I need to get a glass of water straight away.’
Learning experience
Ms Gatland says her journey with epilepsy has been a learning experience, and she hopes to have more opportunities to share what she’s learned. For those at the start of the journey, she says, ‘Don’t be afraid of who you are as an epileptic. There’s many of us out there. You’re not alone. I always thought I was alone.’
According to the latest research, the world’s most common serious brain disorder affects over 65 million people worldwide.
Epilepsy Action Australia plans to Make March Purple for epilepsy, with a special focus on Purple Day, which is coming next Tuesday, 26 March. Started by a nine year old Canadian girl in 2008, this initiative raises funds and awareness to get people talking about epilepsy and to help those who live with the condition.
Find out more about how you can get involved here.
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