Shared from the 3/25/2018 The Age eEdition

Know epilepsy, no fear: knowledge empowers

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Epilepsy is the world’s most common serious brain disorder and can be successfully managed.

Poorly understood among the general public, epilepsy continues to carry a stigma.

‘We really want to increase understanding of epilepsy, to reduce the fear and misconceptions associated with it.’

Carol Ireland

Police officer Bec Lancaster started having night-time seizures when she was 10. She would wake feeling very unwell and sometimes find she had chewed her tongue to the point of bleeding.

After several tests, Bec was diagnosed with epilepsy, a neurological condition that disrupts the usual electrochemical activity in the brain.

While Bec’s seizures stopped when she was 16, the condition re-emerged in her 30s. On returning to work after a stay in hospital brought on by a major seizure, Bec says her employers doubted her ability to continue working and she had to fight to keep the job she loved.

“There is still such a stigma around epilepsy, especially in the workplace,” says the now 39-year-old mother of two. “We need to let people know that having epilepsy doesn’t make us any less capable or any less human.”

Bec is speaking in support of Purple Day, marked on March 26 around the world.

Those with epilepsy gather to encourage friends, family and the wider community to learn more about the condition, which affects up to 250,000 Australians and about 65 million people worldwide.

“Epilepsy is the world’s most common serious brain disorder,” says Carol Ireland, CEO of Epilepsy Action Australia.

“Everyone has heard of it, but much of what people know about it is based on outdated and inaccurate information. We really want to increase understanding of epilepsy, to reduce the fear and misconceptions associated with it.”

Contrary to stereotypical portrayals in films and other media, epilepsy can manifest in different ways for diverse people. There are as many as 40 different types of epilepsy syndromes, meaning each individual’s experience is unique.

“People with epilepsy can exhibit many different types of seizures; some are convulsive, where they fall to the ground and jerk their limbs, while others can manifest as unusual facial movements or simply staring into space,” Ireland explains.

“We want people to understand that with the right treatment and support, the vast majority of people with epilepsy can lead a life as ordinary, or extraordinary, as anyone else, including achieving academic or career success, raising children and whatever else it is they want to do,” she says.

“Epilepsy does not have to limit a person’s life.”

Epilepsy Action Australia’s Purple Day theme this year is ‘Know epilepsy, no fear’, to promote the idea that better understanding of epilepsy can reduce the fear often associated with the condition.

Ireland says epilepsy can be particularly confronting if you don’t understand it or know how to react when you see someone having a seizure.

“We’re all afraid of things we don’t understand and we can feel helpless if we don’t know what to do,” she says.

“I’d like to encourage everyone to go online and learn the basics of seizure first aid today. It could literally save someone’s life.”

Australians can get involved in Purple Day by making a donation, wearing Purple Day merchandise or hosting a fundraising event with a purple twist, such as a barbecue, bake sale or fun run.

A suite of resources designed to increase understanding and awareness of epilepsy is available at epilepsy.org.au.

See this article in the e-Edition Here