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‘New frontier’ trial potentially life changing for severe epilepsy sufferers

31 May 2019

Molly Corbett was diagnosed with a severe form of epilepsy known as Lennox-Gastaut Syndrome as a child and for more than 20 years has endured debilitating seizures multiple times a week.

However, as a result of a world-first trial at Austin Health using Deep Brain Stimulation to treat severe epilepsy, Molly recently went 19 days without a seizure - the longest gap she has ever had between attacks.

Austin Health Lead Researcher, Dr John Archer, said there are 6500 patients across Australia with Lennox-Gastaut Syndrome who, like Molly, suffer frequent seizures that begin in childhood and continue through to adult life.

"These patients and their families live with multiple daily seizures including 'drop attacks' that make patients suddenly and unpredictably crash to the ground, causing further brain injuries," Dr Archer said.

"Relentless epileptic discharges throughout childhood and into adult life damage the developing brain, causing intellectual disability with the majority of sufferers requiring constant care.

"For the first time anywhere in the world we are using a device to deliver electrical impulses deep into the brain to see if we can reduce both the frequency and severity of seizures for patients with Lennox-Gastaut Syndrome.

"It's great to see such a positive outcome for Molly and we're looking forward to more patients being able to benefit from the technology we are trialling," he said.

Molly's parents, Rob and Cathy Corbertt, said the outcome has the potential to be life changing.

"Going almost three weeks without a seizure is an incredible thing for Molly, and for us," Cathy said.

"We are used to seeing her have repeated seizures, multiple times a week. Some of the seizures are so severe that Molly has damaged her front teeth numerous times and even broken her jaw as a result of falling.

"So to go 19 days without a seizure at all is just fantastic.

"The impact the trial has had on Molly has been amazing. Such a dramatic reduction in the the number seizures Molly has is allowing her to live a more normal lifestyle.

"We have seen a visible difference in her and she has been able to do more of the things she loves like taking part in cooking classes," she said.

Dr Archer said the National Health and Medical Research Council-funded study is implanting a stimulator box into the chest of patients to deliver regular electrical impulses to the brain.

"We have traditionally relied on medication and surgical treatment to manage seizures in epilepsy sufferers but devices are very much the new frontier in the hope of improving quality of life for patients," he said.

"There is exploding interest in the use of devices and deep brain stimulation has recently been approved for use to treat certain types of epilepsy in Australia," he said.

"We want to know how effective it is for patients with Lennox-Gastaut Syndrome (LGS) in the hope we can prove its benefit and secure approval to treat LGS sufferers also.

"As part of the trial, electrodes are surgically placed in the brain of patients andthese electrodes are connected to wires that travel under the skin to a pacemaker box below the collarbone.

"Approximately 1 in 200 Australians have epilepsy and while many are able to manage their condition through medication or surgery, 25 per cent of sufferers will continue to experience seizures.

"If we can continue to demonstrate the treatment reduces the frequency and severity of seizures linked to Lennox-Gastaut Syndrome this will be a game-changer in relation to how this condition is treated," Dr Archer said.

The trial is continuing to run.

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