Personalised medicine for epilepsy, rather than one-size-fits-all drugs, will save families like the Bennetts at Albion Park a world of pain.
It’s been years of “trial and error” for 11-year-old Dominic who has childhood absence epilepsy – he doesn’t have violent fits but blackouts where his head and eyes roll back for up to 90 seconds.
His father Ian has welcomed breakthroughs in research – outlined at the Illawarra Health and Medical Research Institute (IHMRI) on Thursday – which would see individually tailored treatments for epilepsy.
“In a perfect world, parents wouldn’t have to pump so many different types of medication through their children before finding one that works,” Mr Bennett said.
“It takes a lot out of Dominic, and a lot out of us, trying to deal with the side effects of different medications.
“One medication made him agitated and jittery, he couldn’t sit still; another turned him into a zombie, he was lethargic and didn’t even want to do anything.”
Six years after diagnosis, Dominic has found a medication that vastly limits his seizures, though he still suffers some side effects.
It’s kids like Dominic that spur University of Melbourne Professor Steve Petrou to develop drugs that not only treat seizures and other symptoms, but stop unwanted side effects.
Prof Petrou is collaborating with IHMRI researcher Associate Professor Mirella Dottori on “precision medicine” for sufferers.
“What’s changed in the last five or 10 years is that our understanding of the genetic underpinnings of epilepsy has advanced enormously,” Prof Petrou said.
“Before researchers were working on making a drug that stops the seizures, however with this better understanding of where the disease emerges, we can look at making a drug that fixes the root cause.”
Prof Petrou said Prof Dottori’s research in disease modelling through stem cells had applications for many conditions, including epilepsy.
“Collaborations with different disciplines is critical to the aim of developing precision medicine,” he said.
“We know 30 per cent of people with epilepsy do not achieve any benefit from medication … the drugs available are okay but they’re not doing anywhere near enough.”
Around one in 100 people have epilepsy – to help raise funds, and awareness, for the condition on Purple Day on March 26 visit www.epilepsy.org.au