Mama from Melbourne Dimitra Kouiroukidis isn’t worried about losing her job when she has an attack, but she knows she’s one of the lucky ones.
Thanks to the support of a close circle of friends, family and a flexible workplace, Mrs. Kouiroukidis only has to deal with the debilitating physical and emotional toll of epilepsy.
But according to a report, the total financial and well-being costs of epilepsy for the Australian economy this year will be $ 12.3 billion by 2019/20, roughly the same as lung cancer and Parkinson’s disease.
And for the estimated 14,603 new cases of epilepsy reported in 2019, lifelong costs per year will amount to $ 22.2 billion.
Prepared by Deloitte Access Economics, the report analyzed the economic burden of epilepsy data collected by the Australian Bureau of Statistics.
According to estimates, approximately 142,740 men, women and children will suffer from epilepsy nationwide in July.
Kouiroukidis, who was diagnosed at the age of nine, suffers from tonic-clonic attacks – formerly known as grand mal attacks – one of more than 40 different types of epilepsy and one of the most serious.
“It’s not a sexy disease,” she said.
“It doesn’t get much money, so people don’t always know much about it.”
The total financial and welfare costs of epilepsy for the Australian economy this year will be $ 12.3 billion in 2019/20, roughly the same as lung cancer and Parkinson’s disease (stock)
Tonic clonic attacks include phases of intense muscle stiffening and often violent spasms associated with loss of consciousness.
“When you get out, you feel like a train has hit you,” Kouiroukidis told AAP.
‘The first 48 hours after that are less than great. I’m usually bed-ridden with a migraine – no light or sunshine – I feel a bit like a zombie, “she said.
The report found that loss of productivity due to epilepsy had the largest financial impact and cost Australia around $ 2.3 billion through reduced participation, days off and lower overall lifespan.
Fortunately, where Mrs. Kouiroukidis works, the ethos is empowerment staff 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 went back to full-time work without losing productivity.
That flexibility “makes a huge difference and because it doesn’t affect my performance, it doesn’t feel like special treatment,” she said.
Epilepsy The president of Australia, Wendy Groot, says that more education is needed to reduce the burden of disease where it counts.
“After people first come to the hospital with epilepsy, people are the most vulnerable and need the most support from the community,” said Groot.
But the funding for the disease is low, despite being the second most severe neurological disease in Australia, after dementia.
In the 2019 federal budget, the Morrison government has set aside $ 20 million over four years to fund the Epilepsy Smart Australia program.
It is provided by Epilepsy Australia and is a series of online education and management tools to support people of all ages with epilepsy, with a focus on reducing stigma.
The organization has already rolled out Epilepsy Smart Schools, a class program for children and young people.
An estimated 142,740 people across the country will suffer from epilepsy in July 2020 and with 14,603 new cases of epilepsy reported in 2019, lifetime costs will increase to $ 22.2 billion per year
Mrs. Groot called on governments to contribute as well.
“Only a few states offer financing and none of it is recurring, they have to be lobbyed every time to continue. We’d rather spend those resources to help families and caregivers, “she said.
She rejected the NDIS and said it will never meet the needs of people with epilepsy. Epilepsy was not even considered for the NDIS in the early stages of the schedule, she said.
“Unfortunately (epilepsy) is really sliding under the radar,” said Groot.
Meanwhile, Mrs. Kouiroukidis’ nine-year-old twins are incredibly proud of their mother because they have come forward to talk about her illness.
She hopes the couple will grow up to educate people and break down the stigma that still plagues epilepsy patients.
“They understand that what your reality is is not someone else’s reality, and that must be celebrated,” she said.