She had awoken with a sore tongue, and her parents were told "Christy was doing something odd in her sleep".

It's since been a roller-coaster ride of self-discovery and acceptance for the now 37-year-old.

"I've learnt to have a voice for my epilepsy, whereas when I was 14 I didn't want people to know," she said.

"Up until I was studying at TAFE, I still didn't tell people, and I had a seizure while I was at TAFE in the toilets and the friend I was with didn't know I had epilepsy.

"After that day I made it clear to myself that people had to know.

"I need to be accountable for it."

Part of that for the Killara mum and her husband Peter is educating their three kids, who might have the same gene triggering the condition that is present in Mrs Milton's family.

"I can't change whether one of our kids it going to have it - all three could potentially have it - but if they do, we'll give them good support," she said.

"My dad didn't tell us he had epilepsy.

"I was probably 12 and my sister and I heard a big crash noise, and we walked into our hallway and there was a pool of blood and dad was lying there.

"He had had a seizure, fallen and cracked his head open.

"Dad didn't not tell us because he thought we couldn't handle it or whatever, but he thought it wasn't relevant and there was a bit of stigma.

"I've made sure I haven't hidden it from my kids.

"Given they are getting a little bit older, we thought it was about time to take some action and do things to create more awareness."

The Milton family will take part in the Walk for Epilepsy at Princes Park in Carlton tomorrow, in support of the Epilepsy Foundation.

The foundation's chief executive, Graeme Shears, said epilepsy could be isolating and this event told people with the condition "they're not alone".

"For a condition that is potentially going to affect one million Australians at some stage in their lives, there's not a lot known about epilepsy," he said.

"Our organisation was started by parents and at that time 30 per cent of people did not get seizure freedom or seizure control through medical intervention.

"And 54 years on, guess how many people don't get freedom from seizures? 30 per cent.

"We're really keen to get the community behind us to try and cure epilepsy."

Last year the foundation launched a research fund, boosted by $2 million from the federal government.

"We had 27 applications that totalled $11.8 million of really excellent research," Mr Shears said.

"There's a demand for funding.

"Whatever we can do to improve the quality of life for people who have epilepsy is really important."

Anecdotes about how life can be improved for people with epilepsy through using medicinal cannabis have led to state and federal legislation changes in recent years.

The foundation released a position statement on the issue in July.

It outlined a sound evidence base "is lacking" for the effective and safe use of the products and urged people to consult a specialist.

"Medicinal cannabis products remain an unapproved drug but now may be accessed ... through the Special Access Scheme," it added.

"CBD [cannabidiol] has been found by a number of small studies, as well as anecdotally, to reduce seizure activity".

On Sunday, Victorian Health Minister Jenny Mikakos announced 30 more children with intractable epilepsy would have access to her government's compassionate access scheme, and that the federal government should include medicinal cannabis products on the pharmaceutical benefits scheme.

Mr Shears said the foundation had advocated for the decriminalisation of cannabis for medicinal purposes and more trials needed to be undertaken.

"If efficacy is provided, it can go on the PBS and people can access it," he said.

"If it's not available through a trial, the cost of it can be $600 to $1200 a week."

Mr Shears said the types of epilepsy that made children eligible for the Victorian scheme were "high-impact, nasty forms" of the condition.

"Intractable epilepsy in general means you're not sure when you're going to have a seizure, so that in itself is very limiting," he said.

"You're always anxious about when you're going to have a seizure, and having a seizure in public, you can feel at risk of being robbed or assaulted - which has happened - or you are just plain embarrassed.

"When we've done research into the impact on people's lives, we've found 48 per cent of people saying they've been treated unfairly because of their epilepsy in the last 12 months, predominantly in a workplace setting, but also in schools.

"There is discrimination that leads people to not disclosing."

Mrs Milton understands why people keep their epilepsy hidden.

"I know a lot of people aren't comfortable disclosing it - I've been lucky that I've had supportive workplaces," she said.

"There was a time there where I was having two to three seizures a week, where I'm knocked out for two days at a time, and I'm no good to anyone, plus I lose my license.

"I can't bath the kids if I'm home alone.

"People think about you having seizures, but not all of the other things you have to think of that just become second nature, and the affect on your family.

"I got to a point where my epilepsy wasn't under control at all and I went to Melbourne for treatment."

The mum-of-three has been seizure-free for two years, which she attributes to Austin Health's Professor Samuel Berkovic, who discovered the genetic link to her condition six years ago.

But it hasn't been easy.

Becoming pregnant came with questions about what medications would do to her baby.

"Pregnancy has probably been the hardest part of my epilepsy," Mrs Milton said.

"Stress can be a trigger, lack of sleep can be a trigger - and that's why I found pregnancy challenging.

"My epilepsy is, touch-wood, stable, but if you start to feel a bit funny, there's still that anxiety.

"Side effects of medication are a big thing for me; I still want to be able to function as normally as possible."

While Mrs Milton has found a different solution with Professor Berkovic, she said cannabis-based products should be more accessible for others.

"You can be put on certain medications and the side effects can be horrid," she said.

"If it [CBD] is helping people and is able to manage their seizures without side effects, I don't see a problem in it at all."

Border epilepsy advocate Sally Hancock agreed that medicinal cannabis products should be on the PBS.

"Taking part in the Very Special Kids hospice, you meet some beautiful families, and one woman's grandson was on CBD and she said the difference in him was amazing," she said.

"It's not their fault that they have these conditions - cancer patients don't choose to have cancer.

"It would make a big difference."

Her son Charlie, who turns 14 in a couple weeks, was diagnosed with Lennox-Gastaut Syndrome (LGS) as a baby.

It involves multiple types of life-threatening seizures and accounts for only two to five per cent of childhood epilepsies.

"Charlie has been placed on life support many times when he is having seizures every couple seconds for up to three or four days," Ms Hancock said.

"He could die with one seizure, let alone the amount he experiences. He's had hundreds of thousands over the years.

"Charlie is one little soldier."

Ms Hancock said she wished there were support groups operating in the region and that there was more awareness of the condition.

"If one person shows compassion - the rest follow - but if one person turns away, everybody does," she said.

"A lot of people don't know what epilepsy is; they're scared of it or are ignorant towards it.

"That's where we need to create more awareness, so that people understand."

IN OTHER NEWS:

Mrs Milton urged people to learn more about epilepsy, and for those living with the condition to speak up.

"I probably feel more in control of my epilepsy than I ever have, and that's because I have a good support system," she said.

"The neurologists and doctors do an amazing job, but if you don't have a voice, that becomes a problem.

"You need to have a voice."