Melbourne’s mum Dimitra Kouiroukidis isn’t worried about losing her job if she has a seizure, but she knows she’s one of the lucky ones.
With the support of a close circle of friends, family and a flexible workplace, all Ms Kouiroukidis has to deal with is the physical and emotional toll of epilepsy.
But according to a report, the total financial and health costs of epilepsy to the Australian economy in this fiscal year 2019/20 will be US$12.3 billion, about the same as lung cancer and Parkinson’s disease.
And for the estimated 14,603 new cases of epilepsy reported in 2019, the lifetime cost will increase to $22.2 billion per year.
The Economic Burden of Epilepsy report, produced by Deloitte Access Economics, analyzed data collected by the Australian Bureau of Statistics.
It is conservatively estimated that around 142,740 men, women and children nationwide will have epilepsy by July.
Ms Kouiroukidis, who was diagnosed at the age of nine, suffers from tonic-clonic seizures – formerly known as grand mal seizures – one of more than 40 different types of epilepsy and one of the most severe.
“It’s not a sexy disease,” she said.
“It doesn’t get much funding, so people don’t always know a lot about it.”
The total financial and health costs of epilepsy to the Australian economy will be US$12.3 billion in this fiscal year 2019/20, about the same as lung cancer and Parkinson’s disease (share).
Tonic-clonic seizures involve periods of intense muscle stiffness and often violent convulsions, accompanied by loss of consciousness.
“When you come out, you feel like a train hit you,” Ms Kouiroukidis told AAP.
“The first 48 hours after that are anything but great. I’m mostly bedridden with migraines — no light or sunshine — I feel like a zombie,” she said.
The report found that lost productivity from epilepsy had the greatest financial impact, costing Australia about US$2.3 billion through reduced participation, days off and reduced total lifetime income.
Luckily, the ethos where Ms. Kouiroukidis works is ’empowerment of the workforce and work-life balance’.
“During a bad time in 2017, my husband was able to call my employer and tell him what happened,” she said.
She took a few days off and then returned to full-time work with no loss of productivity.
That flexibility “makes a big difference and doesn’t feel like special treatment because it doesn’t affect my performance,” she said.
Epilepsy Australia President Wendy Groot says more education is needed to reduce the burden of disease where it matters.
“After people are hospitalized with epilepsy for the first time, that’s when people are most vulnerable and need the most community support,” Ms Groot said.
Funding for the disease is low, however, despite being Australia’s second-biggest neurological condition after dementia.
In the 2019 federal budget, the Morrison government earmarked $20 million over four years to fund the Epilepsy Smart Australia program.
It is a range of online education and management tools provided by Epilepsy Australia to support people of all ages living with epilepsy, with a focus on reducing stigma.
The organization already runs Epilepsy Smart Schools, a class program for children and young people.
An estimated 142,740 people across the country will have epilepsy by July 2020, and with 14,603 new epilepsy cases reported in 2019, the cost of living will increase to $22.2 billion per year
Ms Groot called on state governments to do their part as well.
“Only a few states offer funding and none of that is recurring, they have to be campaigned to keep going every time. We’d rather spend those resources helping families and carers,” she said.
She dismissed the NDIS, saying it will never meet the needs of people with epilepsy. Epilepsy wasn’t even considered for the NDIS in the early stages of the program, she said.
“Unfortunately, (epilepsy) is really slipping under the radar,” Ms Groot said.
Meanwhile, Ms Kouiroukidis’ nine-year-old twins are incredibly proud of their mother, who has come forward to speak about her illness.
She hopes the couple will grow up to educate people and break the stigma that still plagues epilepsy sufferers.
“You understand that what is your reality is not someone else’s reality and that needs to be celebrated,” she said.