Growing up, Thomas Spence was unable to do many things that other children were able to because of the fear he would have an epileptic seizure.
And as a young adult his epilepsy stopped him from enjoying many of the freedoms his peers enjoyed, like getting his driver's licence and finding a career he loved.
But after taking part in a clinical trial of a new drug to treat primary generalised tonic-clinic seizures in people with ideopathic generalised epilepsy, his life has turned full circle.
Two years ago, Mr Spence, 27, had three major seizures in a month which made him eligible for the trial. But since adding the trial drug VIMPAT to the other two anti-epileptic medications he has been on for years, he has had only one seizure after he forgot to take his tablets during a particularly stressful period at work.
Not only does the absence of seizures mean Mr Spence can build a new life, it also reduces his risk of death.
It's why we are in the business, to try to help people and change people's lives. When you do find the treatment that does that, it makes it worthwhile.Professor Terry O'Brien
Generalised tonic-clonic seizures are one of the most serious seizure types and are associated with an increased risk of serious injury, and sudden unexpected death in epilepsy.
"The biggest difference is the freedom I have gained since being on the drug," Mr Spence said.
"I have been able to do so much more with my life, including getting my job as a welder, getting my driving licence and driving every day now,"
"Living in a country town, your independence relies on your ability to drive yourself around. Finally being able to get my licence has been a huge achievement for me.
"There have been many set-backs to goals I've wanted to achieve in life. I know now what I want to do with the rest of my career and what I have to do to get there while living well with my condition."
Mr Spence was diagnosed with epilepsy when he was five, after having a seizure while at a neighbour's house, and as a child was having several seizures a day.
"When I was first diagnosed it would have been the worst time because no one knew what was going on and I was having seizures all the time," he said. :We had to learn how to manage it and learn what different things set me off."
Despite being picked on as a child, Mr Spence has always been open about his condition - even when it cost him his job last year following the one seizure after he forgot to take his medication.
"I transferred schools as a child because the bullying was relentless. But the more people that know about my condition, the better for me and them. It's a safety thing and means that they won't be surprised when a seizure happens."
After teachers said he couldn't concentrate in class, Mr Spence set about proving them wrong and discovered a love of physics and mathematics.
It led him to studying a Diploma of Technical Engineering at Federation University but he decided not to complete it, instead doing only individual units, which led him to his current job as a welder.
"I've got a real passion for physics and engineering so I did that, and thank God I did because it drove me in to welding which is what I really love to do."
He works at Plinius Engineering in Canadian, building trailers for Coles, Woolworths and MaxiTrans.
Mr Spence has been on various drugs all his life to try to control the seizures, but it wasn't until his doctor, Professor Terry O'Brien, who is program director of Alfred Brain and deputy director of research at Alfred Health, placed him in the clinical trial of VIMPAT that his seizures stopped.
Professor O'Brien had 15 patients with uncontrolled epilepsy enrolled in the trial, and Mr Spence was one of five whose seizures stopped completely.
Why are we Walking?— Epilepsy Foundation of Australia (@epilepsy_fdn) August 24, 2021
Epilepsy affects around 250,000 Australians. Even though epilepsy is one of the most common brain disorders in the world, there's still a lot of misunderstanding about what it is and what it is like to live with. We're walking to change that. #WalkForEpilepsypic.twitter.com/MRmSB1zstb
VIMPAT will be listed on the Pharmaceutical Benefits Scheme from today, providing another treatment option for those with uncontrolled epilepsy.
While the drug has previously been on the PBS and used to treat other forms of epilepsy, Professor O'Brien said it would make a massive difference to people like Mr Spence.
"If a drug is not on the PBS then it's really a major out of pocket expense. Many patient with epilepsy are on health care cards, or living in low socio-economic conditions because of employment difficulties, so it's a real struggle to pay out of pocket costs if the drug is not on the PBS."
Without government subsidy, Professor O'Brien said patients would be thousands of dollars out of pocket every year.
"This form of epilepsy has a limited number of (medication) options to try so if they fail the first few options then they are pretty stuck. This provides us with an additional option we know is safe and well tolerated."
He said seeing Mr Spence gain his driving license and thrive was one of the reasons he got in to medicine.
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"It's why we are in the business, to try to help people and change people's lives. When you do find the treatment that does that, it makes it worthwhile."
Even in patients who do not become seizure free, Professor O'Brien said the drug could make a massive difference to their lives.
"These specific type of seizures, general tonic-clonic seizures, have the greatest risk for death and sudden unexplained death in epilepsy," he said. "It's the most common cause of sudden death in young people in the Australian community. Even if we can't make them seizure free, if we cut the seizure number by 50 per cent we reduce the risk of death by 50 per cent."
Epilepsy Foundation acting chief executive Brendan Lillywhite welcomed VIMPAT's listing on the PBS as another option for treatment.