In this century, it’s difficult to understand why epilepsy still carries a stigma, and why those people who have the condition feel they need to hide it from others.
Many famous and talented people throughout the ages have had epilepsy: Alexander the Great, Julius Caesar, Charles V, Joan of Arc, poet Lord Byron, artist Vincent van Gogh, the artist formerly known as Prince, actors Hugo Weaving and Danny Glover, and former Australian rugby league star Wally Lewis, who famously had a seizure while live broadcasting sports news for the Nine Network in Brisbane in 2009.
Despite the talent and accomplishments of all those people, epilepsy is still associated with stigma, perhaps due to the misguided notion that possession and epilepsy went hand in hand, a notion that should have stayed in the Dark Ages where it began.
These days, epilepsy is a well-treated condition, providing seizure-free living for up to 70 per cent of people diagnosed with it. Modern medications are able to treat the condition, and there are lifestyle options that can reduce the likelihood of having a seizure.
Epilepsy ACT chief executive officer Fiona Allardyce says the condition is commonly diagnosed during childhood, and the non-profit organisation sees many parents with children who are newly diagnosed with epilepsy.
“We see a lot of parents whose children are diagnosed with epilepsy,” she says. “Statistically there’s one child with a diagnosis in every school in Canberra.
“Parents get the diagnosis and they don’t know what to do. That’s usually when we see them. We sit down and have a chat with them, and talk them through the epilepsy management plans. The teachers in schools will know exactly what to do if they have a seizure.
“Epilepsy management plans are really good for kids at school. Kids can outgrow epilepsy at puberty – nobody knows if it’s because of the hormones or growing – but that’s usually the stage a child will grow out of it, if they’re going to.”
Fiona says the condition can be helped with diet, reducing seizures by up to 50 per cent.
“There are lifestyle choices which may reduce the number of seizures a person with the condition may have,” she says. “Studies show the Ketogenic Diet or the Atkins Diet, both of which reduce fluid, high fat and very low carbohydrate and protein, can play a big part.”
Epilepsy ACT provides support, training and information to the community and to parents of children diagnosed with epilepsy, and often educates children about their condition.
“We have books we read to children to open up the conversation with them,” says Fiona. “Books are a really good way to start to talk to kids about epilepsy. They work well in classroom settings, and we’ve built up a bit of a library.”
The children’s books can be accessed online at Epilepsy ACT’s website and are intended as a conversation opener with children about their epilepsy.
Epilepsy ACT also holds events and social gatherings to help people with epilepsy and their families to connect with others managing the condition.
“We’re having lots of activities to get people managing epilepsy and their families together so they can see they’re not alone,” says Fiona. “Many of them think they’re the only ones.
“We’re always looking for volunteers, and fundraising has been difficult due to COVID-19 so donations are always welcome.”
Volunteers are needed to help run fundraising activities, including Walk for Epilepsy 2021, which will be held on 7 March. Fiona says corporate sponsors are still needed and they can contact the organisation by calling 02 6287 4555 or emailing the Epilepsy ACT office.
Donations to Epilepsy ACT can be made securely online at its website. Applications to volunteer with Epilepsy ACT can be made via the website’s volunteers page, and you can become a member of Epilepsy ACT on the website’s member page.