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My epilepsy story - Not Bad For A Westie Kid With A Rare Condition

For a bloke that’s made his living inspiring teenagers tolearn and winning over business executives with his charm and smarts, it’s hard to imagine his start was marred by an illness that has sent him into seizures and, at times, has taken command of his faculties.

Luke Eisenhuth is part of an exclusive club. He’s one of only approximately 200 people to have been diagnosed with Landau Kleffner Syndrome. The condition is a rare form of epilepsy that switches off the ‘Broca’s area’ of the brain and is caused by ‘shadowing’.

His experience however, has been far from shadowy – he’s managed to step out of the shadows and face the adversity head-on.

Luke grew up in the South West Sydney suburb of Campbelltown and since his diagnosis at the age of four, he’s been busily bursting the bubbles of this grim diagnoses.

“When I was 4 year of age, I completely and instantaneously lost my ability to speak.”

“I was told I would never speak again, that I’d struggle to make it through mainstream school, and that I’d need special support.”

It wasn’t an easy path to tread, but Luke has managed to forge his own way through life.

“I suffered regularly from tonic-clonic and focal seizures, and I was on medication to control that right up until the end of Primary School.”

“I experienced social anxiety as a kid, and had to deal with some exclusion, coupled with moderate learning difficulties, traits of autism; so, it wasn’t easy…”

Just to confuse people more, Luke could sing even though he couldn’t speak, due to the area of the brain affected.

“I guess you could say, the seizures were one thing – but once I regained speech, it came with a stutter and a high pitch – so, that was at another level. You can imagine how that goes down in the playground”

He feels his experience with epilepsy has shaped his success.

“From being told to never play contact sport, I went on to play professional rugby league. So, I’ve learned to take people telling me about my limitations with a grain of salt.”

Since hanging up the footy boots, Luke took to education and business.

Epilepsy created a lot of fear for Luke, as it does for many people dealing with the condition and their families. For him, almost everything became affected by fear, yet time after time he has climbed all of the mountains life has placed in his path.

 “My own experience in school and the teenage years wasn’t an easy one, so I was really motivated to do what I could to make life easier for the next generation of kids.”

He holds three tertiary qualifications and now focuses his energies to helping large corporates improve their cultures as a Business Education Manager for behaviour, motivation, strategy company Pragmatic Thinking.

“My job now is to help teams and businesses shift their mindsets and build their corporate cultures.”

Still, Luke’s focus hasn’t narrowed to improving the lot of big companies. He remains committed to helping young people on their journeys in life.

“I know what it’s like to do it tough, and I find happiness in educating people of all ages in dealing with tough times”.

“I’m on the way to finishing my book. It’s aimed at helping young people improve their mindsets through motivation and movement.”

‘The book touches on all spheres of wellbeing illustrating my unique view of life through the lens I have been ‘lucky’ enough to experience’.

“I seriously believe everyone can relate to at least some part of my story, and some information will even surprise those closest to me”

Luke has not been in Queensland long, but after attending the Purple Day 2018 celebration in Brisbane, he has already established significant friendships.

“The colour purple itself represents a vast range of strong qualities, much like those who live with epilepsy. Again, like the colour purple, it represents the distinct uniqueness of the condition, and the specific symptoms the individual may face.”

“Purple day is a perfect way to educate the significant impact epilepsy has on individuals and their families, and the link it has to a range of neurological conditions. It simply achieves the most powerful movement- bringing people together.”

Luke strongly believes Purple Day should not be the only time that we talk about epilepsy.

“I hope in the future we see more people who have experienced or live with epilepsy achieving highly and speaking of their condition. I would like to see epilepsy detached from the stigma of being a ‘disability’, or a condition that limits one’s ability. In particular, for children and families to live with less fear, take educated risks and make more effort towards good health and a positive mindset.”

“Personally, I want to continue to prove conditions such as epilepsy do not define a person, yet the person defines the condition.”

Despite his successes in sports, education, and business, Luke maintains his trademark humility.

“It’s not bad for a Westie kid with a rare condition”

If you would like to share your epilepsy story and help break down the myths and misconceptions of living with epilepsy visit: http://bit.ly/ShareMyWhy or contact us on pr@epilepsyqueensland.com.au.