Make March Purple for Epilepsy: Anna’s story

What is epilepsy?

Epilepsy is a brain disorder characterised by recurrent seizures. These seizures can be brief episodes of involuntary movement that may involve a part or the entire body.

All seizures are caused by abnormal electrical activity somewhere in the brain. However, there are many different seizure types and syndromes. Seizures can vary from brief lapses of attention to jerking movements to severe and prolonged convulsions. Some people may remain alert during a seizure and remember what happened afterwards, while others may become unaware and unable to respond to those around them. As a result, seizures can look very different for each person living with epilepsy.

The statistics around epilepsy

• Around 3-4% of people will develop epilepsy at some stage in their life
• 1 in 10 people will have a seizure in their lifetime
• 800,000 Australians will develop epilepsy during their lifetime
• The risk of premature death in people with epilepsy is up to three times higher than for the general population.

Anna's story

I was in high school at a touch football carnival when I had my first seizure. My tonic-clonic seizures involved falling to the ground, my body stiffening and limbs jerking, loud groaning, and a loss of consciousness. Neither my family nor I had ever even seen someone have a seizure before, which made the experience all the more terrifying.

From then on, my seizures became more frequent, occurring almost daily. After six months of doctor's appointments, missing school and trips to the hospital, I was eventually diagnosed with epilepsy.

Going through high school and having frequent seizures certainly had its challenges! Some days were tough, but I was lucky to have been surrounded by an incredibly supportive family, school and community.

I was also fortunate to have been directed to Epilepsy Queensland. Being able to connect with people who were experiencing the same things as me and knowing I wasn’t alone provided some comfort. The online resources and tools also provided me with valuable education about my condition.

With the assistance of successful medical treatment, I am grateful to have been seizure-free for more than a decade.

Stories of courage at the Golden Light Awards

In late 2024, Epilepsy Queensland recognised my continued advocacy work and nominated me for the Asian and Oceanian Regional Golden Light Awards.

The International Bureau of Epilepsy presented the awards at the Asian Oceanic Epilepsy Congress held in Delhi, India, in February 2025.

I’m incredibly grateful to be one of the four winners for the year and honoured to bring awareness to this important cause on a global stage.

Winners had the opportunity to participate in various conference and workshop sessions to share experiences and meet advocates, doctors, people impacted by epilepsy, and their carers from the Asia-Oceanic region and the UK.

Anna’s next chapter in advocacy on the Epilepsy Queensland Board

From the moment I was first diagnosed, Epilepsy Queensland played an important role in guiding and supporting me. That support has stayed with me, and it drives my commitment to give back to the organisation that made such a difference in my early journey.

Being elected to the Epilepsy Queensland Board has been a profoundly empowering moment in my life. This appointment has given me the opportunity to transform my lived experience into stronger advocacy and actively support a community that is so personal to me.

The Board is made up of many incredible individuals who all share a common thread - the lived or living experience of having epilepsy or caring for someone with the condition. This collective insight brings a deep understanding of epilepsy and allows the Board to share perspectives that shape innovative and effective solutions for people in the community.

With this blend of skills, knowledge and background, I am excited to contribute my experience and passion for advocating for individuals with epilepsy by sharing my own story, to assist and support Epilepsy Queensland in the future.

What causes epilepsy?

Epilepsy is estimated to impact around 65 million people worldwide at any given time. However, the exact cause of epilepsy is unknown in approximately 60% of people living with epilepsy.

Known causes of epilepsy, such as pre-natal birth traumas, brain and spinal cord infections, traumatic brain injuries, and strokes, contribute to the development of almost 25% of all epilepsies. All of these conditions are largely preventable, and prevention treatments and early therapies play a key role in reducing the rate and impact of epilepsy.

Our specialist medical negligence lawyers work alongside many clients who suffer from catastrophic and traumatic injuries, such as birth traumas, brain injuries, infections and strokes, which can later cause epilepsy and seizures. We understand all too well how debilitating, exhausting and scary epilepsy can be for our clients and their families.

Information and support for people living with epilepsy

If you are living with epilepsy or supporting someone living with epilepsy, you can find more information and support from the following organisations:

• Epilepsy QLD provides support to families, training to carers and can assist with developing Epilepsy Management Plans (EMPs).
• Epilepsy Smart Australia provides telephone support, tailored advice and referrals to other services for people living with epilepsy.
• NDIS funding can be obtained in some circumstances for those living with epilepsy.

Treating practitioners and neurologists will manage medical care and provide advice about medication or other treatments

We must continue to raise awareness so that hundreds of thousands of Australians living with epilepsy, like our client Amelia, can continue to get support and improved treatment.

Find out how you can Make March Purple this month to help empower and support Australians living with epilepsy.