The cost of active epilepsy in Australia has been estimated at $12.3 billion, with productivity identified as the greatest loss.

The 61-page Economic Burden of Epilepsy in Australia report accounted for a range of costs.

Lockington mother Carolyn Lewis identified medication and training for the professionals working with her 16-year-old daughter, Kaitlyn, among the financial pressure points.

But what weighed on her mind most were the effects of exclusion, isolation and fear.

"Epilepsy is probably one of the things that causes my daughter the most discrimination," Mrs Lewis said.

"People are scared of it."

Kaitlyn is also living with a number of other medical conditions.

Mrs Lewis said her teenage daughter was excluded from a lot of activities because she was "higher risk".

There were limited support services that would care for Kaitlyn, and Mrs Lewis believed people - including some extended family members - were afraid to offer assistance.

"It's too hard, I think, for many people," she said.

Mrs Lewis said there needed to be more community awareness and education about epilepsy and greater focus on the impacts.

"It's not going to go away," she said.

Epilepsy is the most common serious brain disorder in the world, according to the Epilepsy Foundation.

An estimated 142,740 people in Australia are living with active epilepsy.

The neurological condition results in recurring seizures.

Epilepsy Foundation chief executive Graeme Shears said the economic burden of epilepsy was just part of the picture. He said the psychological and social impacts were equally, if not more, important.

The foundation was seeking to make training more accessible, and to engage with more schools.

"Once people understand epilepsy the fear about it will reduce," Mr Shears said.

Research had identified discrimination and unfair treatment as key concerns for people living with epilepsy, with workplaces and schools among the most problematic settings.

Sometimes, seizures were not the most disabling aspect of epilepsy, Mr Shears said.

"No matter where you live, you should have access to the best possible supports," he said.

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