Sebastian Johnston regularly enjoyed a night out on the town with mates, but says his life was "flipped upside down" a year-and-a-half ago when he had a seizure out of the blue.
After waking from a week-long induced coma, Mr Johnston was diagnosed with epilepsy and an acquired brain injury, and said his family had "no clue" what to do next.
Now he is calling for more understanding for young people living with the condition, which often impacts every aspect of their lives, beyond having seizures.
The 21-year-old said his epilepsy has had a significant impact on his independence — affecting his ability to drive, play contact sports and swim unsupervised.
He often wears sunglasses to reduce the effects of flickering lights in his peripheral vision, which can lead to migraines.
"Some days I'll have to have a nap from the fatigue if I see a flashing light," he said.
"Social life takes a big hit as well. You get anxiety, and you don't like talking about it to people."
The causes of Mr Johnston's seizures "baffled" doctors, according to his mother Katrina, but are now controlled with medication and a consistent daily routine.
"He's gone from being a regular teenager out there living the life and having a great time, going travelling, he went backpacking, to having all of his liberties taken away," she said.
"We're just very, very grateful that we've got Seb because ... at one stage we were looking at not having a Seb.
"He's doing so well. He's great. We love him."
'Slipping through the cracks'
Epilepsy affects up to 50 million people worldwide, according to the World Health Organisation (WHO), but advocates say many still experience stigma and discrimination.
Leeanne Gaskin, a registered nurse with the Epilepsy Centre in Adelaide, said people often did not talk openly about epilepsy.
"Being that it's so common, you'd think there'd be more information, and I think a lot of that is the fear and the myths and the misinformation," she said.
She said while epilepsy was not a mental illness, judgement and misinformation could contribute to significant mental distress among patients.
Ms Gaskin said long wait times to see a neurologist in South Australia were also concerning.
She said urgent referrals to see a neurologist had a two-to-three year wait in the public system, causing some people to "slip through the cracks".
"Even with some of the private neurologists it can be a two-year wait," she said.
Sarah Ripper, co-owner of an Australian ethical menstrual care company, was diagnosed with epilepsy eight years ago, and said the tagline should be "epilepsy — it's more than seizures".
"Until ... people have close interactions with people who have epilepsy or experience it themselves ... you perhaps don't understand that it really is more than just having a seizure," she said.
"And that seizures are more than just one kind of seizures, there are many types."
She said symptoms like migraine, memory loss, vomiting and fatigue following seizures, as well as adverse side effects of medication, had broad impacts on daily life.
But despite daily challenges, she said she hoped negative perceptions of epilepsy would shift, saying the condition had given her "insights" into herself she otherwise would not have had.
"What have I harvested that I maybe wouldn't have if I didn't go through these things?" she said.
For Mr Johnston, support from his parents and medical team has helped him get back into DJ'ing and sports, and he has recently found employment.
He encouraged others dealing with similar experiences not to be "scared of it" and to "embrace it".
"Just grow with it, learn it and live with it,"
he said.
