ALMOST half of epilepsy sufferers in Australia experience some form of discrimination because of their condition - a revelation that has celebrities and researchers calling for action.
Research released on Tuesday into the treatment of people suffering from Australia's most common chronic brain disorder found 44% of patients and carers had been the target of unfair treatment in the past 12 months.
The most common form of treatment came by way of discrimination followed by exclusion and collectively assault, workplace/school bullying and teasing.
It is a situation reality TV star and born and bred Gold Coast local Nathan Jolliffe knows ample about.
The model suffered from epilepsy as a child and has juggled with social anxiety, an off shoot of his earlier epilepsy, throughout his teens and 20's.
"It was something I was really conscious of and I was embarrassed about it," the Amazing Race TV show winner said.
"The social anxiety and stigma of it, people fear to live their day to day lives."
The now Sydneysider said he did not realise he was suffering from social anxiety until his late teens.
"It took a while to understand what was happening and to get my thoughts under control," he recalled.
"I think there are still a lot of people that don't understand it."
Mr Jolliffe, runner-up in Celebrity Apprentice, paid tribute to his older brother, Matt, who helped him throughout his school years and protected him from the stigma.
"He wore a lot of it himself too," he said.
"If I ever felt embarrassed he always took it upon himself to protect me and that was so good for me because it made me feel safe and accepted in an environment where my parents were not."
Lead study author of the E-Word: Epilepsy and Perceptions of Unfair Treatment research, Dr Michelle Bellon, said unfair treatment and stress could actually exacerbate epilepsy symptoms.
"We asked respondents to elaborate on these experiences, and received some disturbing responses," she said.
"One carer who participated in the study on behalf of a young boy living with epilepsy, revealed that other parents at the child's kindergarten would not let their children near the boy 'in case their child got sick and ended up like him'."
Twenty-per-cent of respondents in the study pinpointed poor community understanding of epilepsy as the biggest cause of their unfair treatment.
While 12% pinned it down to social judgment.
Epilepsy Queensland chair Louise Foley said understanding of epilepsy was key to dispelling the condition's stigma.
"The social consequences or stigma faced by people living with epilepsy is often worse than the disorder itself," she said.
"However, epilepsy does not necessarily prevent people from becoming high achievers, or from leading active, fulfilling lives."
Many people would be surprised to know that famous people, including artist Vincent Van Gogh, writer Oscar Wilde, and cricketer Tony Greig, had epilepsy.
Tuesday marks Purple Day, a global epilepsy awareness initiative.
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