For most chronic diseases, prevention is central to the conversation. In epilepsy, however, the system still largely reacts.

Across Australia, an estimated 266,000 people are living with epilepsy, yet public understanding of the disease often begins and ends with the visible seizure. In many cases, care pathways still form around acut

e events – ambulance call-outs, emergency presentations, and medication adjustments following episodes.

For the healthcare sector, this raises an important question: is it time to reframe epilepsy care around risk prevention rather than crisis response?

Epilepsy is a chronic neurological disease defined by recurrent, unprovoked seizures caused by abnormal electrical activity in the brain. While seizures are the defining symptom, the true burden of the disease extends far beyond the episode itself. Independence, mental health, education, employment, and family life are all affected by the disease’s inherent unpredictability.

Despite advances in anti-seizure medicines, up to one-in-three patients live with drug-resistant epilepsy, where seizures persist despite appropriate medication trials. For this group, the disease remains unpredictable and associated with heightened clinical risk.

Awareness of this challenge remains low. Around 60 per cent of Australians are not aware of drug-resistant epilepsy, including many people living with epilepsy, or caring for someone who does.

According to Chief Executive Officer of Epilepsy Action Australia, Ms Carol Ireland:

“Low awareness and ongoing stigma around epilepsy continue to cause discrimination, social isolation, and delayed diagnosis or treatment for patients. Both the prevalence of epilepsy, and the profound difficulties experienced by people with drug resistant epilepsy are still not well understood.”

For the pharmaceutical, biotechnology and medical technology sectors, epilepsy represents both a significant unmet need and a rapidly evolving area of innovation.

Advances in neuromodulation – including responsive neurostimulation and deep brain stimulation (DBS) – are opening new pathways for patients living with drug-resistant epilepsy.

Developments in implantable devices, closed-loop stimulation systems, and long-term neural monitoring are enabling clinicians to move beyond purely reactive treatment models toward continuous management of brain activity.

At the same time, ongoing research into novel anti-seizure therapies, digital monitoring tools, and data-driven approaches to neurological care is expanding what effective epilepsy management could look like in the future.

These developments reflect a broader shift across medicine: from episodic intervention to anticipatory care.

Between seizures, life rarely returns to a neutral state. While some patients recover quickly after an epileptic episode, others may take minutes or hours to regain full cognitive and physical function. For many, daily life involves managing medication schedules, sleep patterns, anxiety, and environmental triggers while living with the uncertainty of when the next seizure might occur.

Yet public awareness has historically focused on what to do during a seizure. Far less attention has been given to what should happen before one occurs.

A prevention-oriented approach to epilepsy care would prioritise:

• Earlier specialist referral following a first unprovoked seizure;
• Routine integration of mental health support into neurological care;
• Recognition of lifestyle interventions as a core component of clinical management;
• Use of data and monitoring technologies and tools to identify seizure patterns and risks; andd
• Workplace and school policies designed to support people living with epilepsy before a crisis occurs.

Other areas of medicine have already embraced risk prediction and proactive care models. Cardiology does not wait for a second heart attack to intervene. Diabetes care does not rely on emergency admissions to define success. Epilepsy care is beginning to move in the same direction, however, there is still much work to be done across clinical practice, public awareness, and health system design.

In 2026, we stand with the one in 26 people who will be diagnosed with epilepsy in their lifetime. As Purple Day on March 26 approaches – a global public health initiative dedicated to generating epilepsy awareness – there is an opportunity to broaden the conversation around the condition.

This is the time to amplify patient voices, challenge stigma, educate communities, and improve understanding. Importantly, it is also a chance to support earlier diagnosis and recognise the role that medical innovation and collaboration can play in improving patient health outcomes.

During National Epilepsy Awareness Month, awareness must extend beyond knowing what to do when someone has a seizure. It must also focus on how we reduce the likelihood of that seizure occurring in the first place.

If we only respond post-seizure, the most critical window for intervention has already passed.

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