Why the government is taking epilepsy seriously
Epilepsy has been high on the Government agenda this year, with a number of initiatives being rolled out to boost awareness and manage symptoms for the 250,000 sufferers in Australia.
NSW Department of Health’s new epilepsy app
Launched in March this year as part of epilepsy awareness ‘Purple Day’, the NSW Department of Health announced a new mobile app called EpApp as part of an initiative targeted to teenagers to help manage epilepsy away from the doctor’s surgery.
The technology provides critical information on seizure triggers (such as sleep deprivation, alcohol), driving rules, contraception and safety. The app also offers medication reminders, a seizure diary and direct-dial numbers for mood support, and was developed by the Paediatric Epilepsy Network NSW (PENNSW) in association with the Sydney Children’s Hospitals Network.
And with epilepsy coming in a variety of forms, the mobile/tablet app recognises the unique issues experienced by adolescents with epilepsy.
Over 500 people have already started using the app since its launch. And with epilepsy affecting around 150,000 people in NSW, Head of Paediatric Neurology, Sydney Children’s Hospital Randwick, Dr Annie Bye, said she would like to see even more individuals using it.
“Epilepsy is considered the world’s most common brain disorder, affecting more people than Parkinson’s disease, multiple sclerosis and cerebral palsy combined,” she said. “It’s very pleasing to see the uptake of this app so far, which empowers individuals, especially teenagers, to self-manage their epilepsy and improve their standard of care.”
Federal Government’s $2m initiative
Also part of Purple Day, Federal Health Monister Greg Hunt announced the Federal Government is set to inject an extra $2 million in new medical research to help find a cure.
“Epilepsy is a chronic disorder of the brain that affects people of all ages, with around 250,000 Australians living with the condition,” he said. “This new funding will support our leading researchers to investigate genetic and other causes of epilepsy including the mutation of the Syngap gene, a rare neurological condition which can lead to epilepsy.”
The SYNGAP-1 project will be the first project undertaken by the Australian Epilepsy Research Fund, and will be led by researchers from the respected Florey Institute of Neuroscience and Mental Health.
Established by the Epilepsy Foundation, the Australian Epilepsy Research Fund aims to offer Australians living with genetic and other types of epilepsy hope for the future through medical research. The Epilepsy Foundation also works with individuals and families, organisations and the community to increase people’s understanding of epilepsy.
“It is my hope that this funding contributes to a medical breakthrough that will improve the lives of people living with this condition,” Hunt added.
Since 2013 the Coalition Government has invested more than $58 million for epilepsy research through the National Health and Medical Research Council (NHMRC). Meanwhile the Turnbull Government has spent more than $71 million on the PBS for medicines to treat epilepsy in 2016-17.
The announcement follows news only two weeks earlier that the Administrative Appeals Tribunal found an 11-year-old girl in foster care in Tennant Creek, who is blind, has epilepsy and cognitive impairment, was wrongly denied national disability insurance scheme support worth tens of thousands of dollars.
