Epilepsy ACT’s Ashleigh Gold says people living with epilepsy face serious stigma, particularly in school and the workplace. Photo: Epilepsy ACT.
There are more than 4500 people living with epilepsy in Canberra.
Epilepsy is a central nervous system disorder that disrupts nerve cell activity in the brain. The condition has a range of causes, including genetic disposition, head trauma and infectious disease – but sometimes, there is no identifiable trigger.
Ashleigh Gold worked as a teacher and a nurse before her role as epilepsy educator, comprehensive support and peer support coordinator at Epilepsy ACT.
She explains the biggest hurdle for those living with the condition is overcoming the stigma that surrounds it.
“Stigma surrounding epilepsy can be really challenging. People with epilepsy face so much discrimination, misunderstanding and even exclusion from activities or opportunities simply due to misconceptions about their condition,” she says.
“There’s a widespread perception that epilepsy always looks like a tonic-clonic seizure where the person loses consciousness and may fall to the ground, have rigid muscles and experience convulsions.
“In reality, there are more than 60 types of seizures. Some people have seizures that occur without an obvious trigger and can be hard to spot once in motion. Absence seizures, for example, are often described as looking like the person is daydreaming.”
For schools and places of work, these misconceptions can lead to fear. People with epilepsy can be perceived as less intelligent or less able – some out there even believe the condition is contagious.
Ashleigh says education and awareness are crucial to challenging these misconceptions and creating more inclusive and supportive environments.
“We’re so good at being inclusive of other chronic conditions and disabilities such as asthma, anaphylaxis and diabetes – we’ve proven we can do it, but epilepsy has somehow missed out.
“Without proper support, people with epilepsy can feel isolated, undervalued or even unwelcome in their communities, schools and workplaces.
“One in four of them experience anxiety or depression. Stress can lower seizure thresholds, making seizures more frequent, so in the face of stigma, it’s a vicious cycle.”
Seizures are most common in young children and the elderly, but they can happen at any age. There are more than 60 types, each with its own presentation. Photo: Epilepsy ACT.
Epilepsy ACT offers training for employers, educators and carers to help them become more informed, aware and equipped to care for and advocate for people with epilepsy.
“Providing accurate information, promoting diversity and inclusion initiatives and offering support services to combat that stigma and improve equal opportunity is really important,” Ashleigh says.
“We offer ‘understanding and managing epilepsy’ training for teachers, disability and aged care workers, families, workplaces and more.”
Having a comprehensive epilepsy management plan tailored to the individual is often the first step in gaining a level of security and understanding to help fight fear caused by misunderstanding.
An epilepsy management plan is a resource for anyone with a person with epilepsy in their care that helps them understand what to do (and what not to do) in the event of a seizure.
“Given that Canberra is such a tight-knit community and we are a relatively small organisation, Epilepsy ACT has the unique ability to tailor epilepsy management plans for individuals to workshop with their school, workplace and home,” Ashleigh says.
“We can also tailor training for individual epilepsy management plans.
“I did training at a daycare, for example, where we specifically went through that child’s plan. The parent was able to describe what they do at home and what it looks like, so the whole cohort was well prepared.”
World Purple Day, an international day of recognition dedicated to increasing awareness and support for people living with epilepsy, is on 26 March.
“Getting involved in World Purple Day is easy,” Ashleigh says.
“It can be as simple as wearing something purple on 26 March. You can also host your own event or challenge, donate to the national Make March Purple campaign or share your own epilepsy story with us online.”
Visit Epilepsy ACT to learn more about epilepsy management training in Canberra or to plan your support for World Purple Day.
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