Human rights and international law expert Professor Hilary Charlesworth, says that Australia's appointment to the UN Human Rights Council gives the country an opportunity to examine its own human rights record.
Published in the journal Epilepsia, the changes update epilepsy’s equivalent to psychology’s DSM — the International League Against Epilepsy (ILAE) Classification of the Epilepsies, which had its last major update in 1989.
University of Melbourne Professor Ingrid Scheffer – lead author of one of three articles containing the updates – said they were urgently needed, especially as two thirds of Australians diagnosed with epilepsy never see an epilepsy specialist.
“Given that most people are diagnosed at their local GP’s office, it’s absolutely critical that doctors have access to the latest understanding about epilepsy, to guide drug treatments — which can have side effects – and decisions that may restrict patients’ lives,” said Professor Scheffer, who is also director of Paediatrics at Austin Health.
“Epilepsy is a very complex group of diseases, with different risks and mortality rates for different types of seizures, and about one third of people are not fully controlled with current medications.
“A diagnosis can mean being shut out of employment or activities others take for granted, like driving, or being at the receiving end of lower expectations in education and working life.”
Professor Scheffer said researchers have discovered hundreds of genes for epilepsy, as well as new imaging techniques and a better understanding of how genetic mutations lead to abnormal function.
“It’s important that the advances of the past 30 years are now reflected in the global classification so everyone shares the same terminology and understanding of seizure disorders. Where relevant, families can also receive genetic counselling.”
Epilepsy can also be associated with learning or intellectual problems, autism spectrum disorder and movement disorders.
The CEO of the Epilepsy Foundation, Graeme Shears, said the right diagnosis could have life-changing consequences, and potentially help reduce stigma and discrimination.
“If you have seizures that only occur at night, in your sleep, it could mean you are just as safe driving a car and operating machinery as anyone else – but you might need to make sure you don’t sleep alone,” he said.
Epilepsy is among the top five causes of avoidable death between the ages of five and 29, leading to around 300 fatalities in Australia each year.
“About 45 per cent of these potentially avoidable deaths are through accidents such as burns, drowning and car crashes,” Mr Shears said.