Walk to help with a condition that will hit 16,000 Canberrans

Andrew Lagger was five years old when he was diagnosed with epilepsy and 15 when the seizures stopped.

Though a brilliant development in his condition, he now has an intellectual ability that he believes was a direct result of epilepsy.

“I tend to believe it came from that, definitely,” he says.

“The seizures interfere with your neural activity and your brainwaves.”

Epilepsy ACT CEO Fiona Allardyce says it’s not unheard of for a person’s epilepsy to stop.

“We no longer say it’s a lifelong condition, which is good news,” she says.

“The fact is there are so many variations of how this condition can affect people. There is a phase for kids where they can ‘grow out of it’ and cases where adults might not suffer a seizure until they’re in their 20s or even later on. There are others like Andrew whose conditions go away and many who do suffer from it their whole lives.”

Regardless of where an epileptic’s experience falls on this spectrum, the condition can have a lifelong impact, whether it be psychological or, in cases such as Andrew’s, damage to the brain.

Much like his epilepsy, Andrew’s cognitive difficulties are invisible yet present challenges in daily life.

But you can’t keep a good bloke down. Not only does he hold down a job in construction, he also aspires to motivate others to overcome their difficulties, particularly those experiencing feelings of isolation.

“It can be a very isolating experience. Things have changed, they’re getting better, but we still have a long way to go,” he says.

“I want people to know, you’re not alone. There are people who understand what you’re going through and how you feel.”

This message is why he will participate in the Walk for Epilepsy 2023 next month.

The walk kicks off the Make March Purple campaign – a national initiative between all the states and territories across Australia to raise awareness of this largely invisible condition.

Epilepsy ACT CEO Fiona Allardyce says the campaign is underpinned by one staggering statistic.

“Every 33 minutes someone’s life is turned upside down by epilepsy,” she says.

“Over 16,000 Canberrans will develop epilepsy in their lifetime and need support, research and a cure.

“Talking about epilepsy is the best way to help squash the stigma.”

The walk not only serves as a powerful platform to raise awareness and combat the stigma surrounding epilepsy, it also serves as Epilepsy ACT’s major fundraising event for the year.

With only a small amount of government support, funds raised help keep the doors of this invaluable service open.

“It allows us to meet with clients and provide them with the support and information they need – especially at that new diagnosis stage when they can feel quite overwhelmed,” Fiona says.

“We go to schools and workplaces to train staff and family members on epilepsy response and administering potentially lifesaving medication.

“We also assist with workplace inclusion, engagement and support in the community and, importantly, help people with epilepsy and their families create management plans.

“Like many community services and charities, the cost-of-living pressures have impacted funding. So we’re hoping the community will dig deep to help keep these vital services in place.”

The walk takes participants on a 5 km bridge to bridge around Lake Burley Griffin, lasting about an hour.

Fun activities at the start/finish line for the whole family will include live music, free face painting and balloon modelling, lawn games, plenty of prizes to be won, a barbecue and drinks available for purchase and Lazy Grazer platters available for pre-order.

This year’s fundraising goal is $20,000, and while the organisation has a way to hit this target, Fiona is hopeful.

But it’s not necessarily the most important outcome of the event, which also serves to bring together anyone impacted by the condition.

“Part of the reason we initiated the walk six years ago was to get people meeting with other people who have or had epilepsy, to help them form a community and support network for each other,” Fiona says.

“We want them to see, not just believe, that they’re not alone.”

The Walk for Epilepsy 2023 kicks off at 10 am on Sunday, 5 March, at Commonwealth Place, Lake Burley Griffin. Registration starts at 9:15 am and costs $30 per person or $95 for a family of four. Click here to sign up.