There are currently 250,000 people diagnosed with epilepsy in Australia, but for most, their only knowledge of the disorder is one limited to fictitious depictions on screen.

To help change that, Epilepsy Action Australia (EAA) has committed to raising awareness in November with the launch of its nationwide fundraising initiative, the E-Tea.

“This year we thought, let’s encourage people to do something simple to help us,” says the EAA’s CEO Carol Ireland.

“Anyone can do it, whether they’re at home with family or in the office or at school. Just organise your own little event around having a cup of tea and raise some money for Epilepsy Action in the meantime.”

Up to 800,000 people in Australia will be diagnosed with epilepsy at some stage in their life, which, according to the World Health Organisation (WHO), is actually the world’s most common serious brain disorder.

“There are lots of different brain disorders, but epilepsy is certainly the most common, and it’s probably one that few people know about,” Ms Ireland tells Neos Kosmos.

“They tend to think it’s a particular kind of seizure where someone falls to the ground, convulsing and so on, now called a tonic clonic seizure (formerly known as grand mal seizures). It’s actually much, much more complex than that, and is one of about 45 epilepsy syndromes and seizures that we know.”

Epilepsy does not discriminate; affecting both men and women, it can occur at any age. While for some there may be genetic causes, for others the disruption of the normal electrochemical activity of the brain is brought about as a result of serious head trauma from a sporting or motor vehicle accident, and can be a co-morbidity of other conditions such as stroke or tumours. Those diagnosed suffer recurring seizures, but the immediate underlying cause remains unknown.

While about 60 per cent are able, through trial and error of medications, to get reasonable seizure control, and a handful are candidates for surgery, they are considered the lucky ones. The other 40 per cent have intractable epilepsy, or what is known as medication resistant.

“This is the sad part; they don’t get control of their seizures, unfortunately,” Ms Ireland explains. “It’s a pretty large number and those people go on to have seizures sometimes every single day. At the really tough end you’ve got little kids who can have up to hundreds of seizures a day, every day.”

In these cases it can be impossible to go to school or work, which can lead to poor quality of life, isolation, and subsequently depression and anxiety, not to mention the emotional and financial toll on families.

Thankfully, innovative trials continue to provide hope, with the most recent being the passing of the medicinal cannabis bill, allowing the trial of one of the plant’s compounds, cannabidiol, to be tested on children suffering from epilepsy.

While Ms Ireland admits to it being “the most promising treatment option that I’ve heard about in many, many years”, she is realistic about the fact that it won’t be a solution for everyone, with overseas statistics demonstrating about three out of 10 children benefiting from the treatment. “I think in 10 years it might be a different story, when the other compounds are tested, and they’re more sophisticated in making the medicines. But I think it’s going to take a long while.”

To ensure the search for a cure continues, all funds raised throughout epilepsy awareness month will be put towards various research initiatives, along with life changing services and programs to help those already diagnosed and their families.

To assist with the E-Tea fundraising effort, the EAA is sending out free goodie packs containing tea and coffee samples, along with treats and baking supplies to those who register to hold an event.

“I’d like to say something the World Health Organisation says: there’s probably no condition more neglected than epilepsy. This is just an opportunity to raise some awareness, and raise some funds. Every little bit helps.”

To register and order a free E-Tea starter pack, visit www.epilepsy.org.au or call Epilepsy Action on 1300 37 45 37.

* Epilepsy Action Australia is the national provider of education and support services for people with epilepsy, the community and professionals.