FOR 16 years, Deebing Heights resident Danielle Stevens has lived with terrifying uncertainty as drug-resistant epilepsy has slowly robbed her of the independence, freedom and everyday experiences she once took for granted.
As National Epilepsy Awareness Month is marked in November, she is sharing her deeply personal battle to expose the invisible struggles of a condition affecting thousands of Australian families.
“Epilepsy has taken a lot of things away from me,” she said.
“But it can’t take my love, humour, creativity, love for my family, friends and animals, and my ability to turn pain into purpose.”
According to Epilepsy Action Australia, epilepsy affects approximately one in every 150 Australians and is more common than Parkinson’s disease, cerebral palsy, multiple sclerosis and muscular dystrophy combined.
“My future is nothing like I imagined it would be and at times I grieve my life before epilepsy,” she said.
“Before epilepsy I had a life with freedom, spontaneity, energy and predictability.
“I had a body I could trust. I could make plans that didn’t require a risk assessment.”
“Epilepsy doesn’t care who you are or what you had planned.”
While others measure their days through achievements and milestones, Ms Stevens has learned to celebrate the little things.
“I am grateful when I wake up and have a fairly symptom-free day,” she said. “Epilepsy is unpredictable and in turn your quality of life quietly shrinks and while the world keeps moving forward, those moments of absence accumulate.”
Ms Stevens stresses that epilepsy affects people differently, with many maintaining careers, playing sport and enjoying active lives through effective seizure management.
“This is 24/7, every day, every night, for the rest of my life,” she said.
“The time spent behind closed doors trying to rest, recover and simply survive aren’t just carried by me, but my family too.
“The burden is shared, the isolation is shared, and the world rarely sees how much this condition demands from everyone who loves and supports me.”
Despite everything epilepsy has taken, Ms Stevens refuses to let it silence her and wants readers to replace fear and misconceptions with understanding, compassion and potentially life-saving knowledge.
“When people don’t understand epilepsy, fear fills the gaps,” she said. “One in 10 people will experience a seizure in their lifetime.
“Knowledge is power, and seizure first aid saves lives.
Learning what to do, and what not to do, can make all the difference.”
Famous Epileptics
FROM sporting legends and Hollywood stars, to music icons and historical figures, epilepsy has touched some of the world’s most recognisable names.
WALLY LEWIS: The Maroons rugby league legend, affectionately known as “The King”, has become a prominent advocate for epilepsy awareness after publicly sharing his diagnosis.
PRINCE: The late music superstar revealed he experienced epileptic seizures as a child.
HUGO WEAVING: The Australian actor, famous for The Matrix and The Lord of the Rings, experienced his first epileptic seizure at 13.
DANNY GLOVER: Best known for the Lethal Weapon films, the Hollywood actor experienced seizures from his teenage years.
EDGAR ALLAN POE: The celebrated American author has been the subject of medical theories involving epilepsy.
