Seeing beyond the seizures

Misconceptions still surround epilepsy, despite how common it is. Lyndsay Jensen looks at why awareness and understanding remain essential.

Photograph: Pexels / Google DeepMind

Text: Lyndsay Jensen

Every year, on the second Monday of February, the world marks International Epilepsy Day - a moment to recognise a condition that affects millions of lives but remains misunderstood. For people living with epilepsy and their families in Denmark, this day is both a reminder of ongoing challenges and an opportunity to deepen public awareness, challenge misconceptions, and advocate for meaningful support.

Epilepsy is common and misunderstood

Epilepsy is not a single disease but a spectrum of neurological conditions characterised by recurrent unprovoked seizures - sudden bursts of electrical activity in the brain that can affect awareness, behaviour, sensations, and movement. It is one of the most common neurological disorders, second only to headaches in frequency globally.

In Denmark, epilepsy affects between 0.7% and 1% of the population, which translates to roughly 50,000–55,000 people living with the condition.

That means in many communities, workplaces, classrooms, and families, epilepsy is not rare - it is normal, a part of everyday life for thousands.

Lives shaped by a spectrum of experiences

Epilepsy affects individuals differently. For some, seizures are frequent and severe; for others, they may be rare and subtle. Some people may live decades with epilepsy without major disruptions to daily life; for others, the condition shapes their choices around work, education, social life and even family planning.

Research using nationwide registry data in Denmark found that people with epilepsy are significantly less likely to have children, with men showing a 41% lower likelihood and women a 28% lower likelihood of becoming parents compared to those without epilepsy. The reasons behind this are complex, encompassing biological factors, social barriers and the lingering effects of stigma that can influence relationships, economic security, and life decisions.

The numbers tell a story

A large population-based study in Denmark estimated that around 697 individuals per 100,000 population lived with epilepsy on 31 December 2018, amounting to more than 40,000 people in a population of nearly 5.8 million. These figures provide an important snapshot, but they also highlight how data definitions matter: when broader criteria are included, prevalence estimates can be even higher.

Beyond the numbers, it is crucial to understand the human impact behind them: each data point in these studies represents a person with aspirations, challenges, and a unique story.

Treatment: Hope and challenges

The primary treatment for epilepsy is antiepileptic medication, which aims to reduce or prevent seizures. In Denmark, as in many countries, about two-thirds of people with epilepsy can achieve good seizure control with medication.

For those whose seizures do not respond to medication - often termed drug-resistant or refractory epilepsy - other options may be considered. These include surgical intervention, nerve-stimulation therapies, or specialised dietary approaches.

Despite medical advances, treatment is not just about controlling seizures - it is also about managing side effects, balancing quality of life, and addressing the psychological and social components of living with a chronic neurological condition.

Epilepsy and mental health

People with epilepsy often face higher rates of co-occurring psychiatric conditions, including anxiety and depression, compared with the general population. These challenges may arise from a mix of neurological, social and psychological factors - and they remind us that epilepsy care must be holistic, addressing both physical and emotional health.

Stigma: The invisible barrier

Perhaps the most persistent challenge for people with epilepsy is stigma. Misconceptions - such as the belief that epilepsy is a sign of cognitive impairment, “possession”, or unpredictably dangerous behaviour - can isolate individuals socially and professionally. Even subtle forms of stigma can have real consequences: from reluctance to disclose a diagnosis, to obstacles in finding employment, to strained relationships.

International Epilepsy Day exists to challenge these misconceptions - to put faces, voices, and experiences behind a diagnosis, and to remind society that people with epilepsy are not defined by their condition.

A personal reflection

If you live with epilepsy, know this: your life is not defined by your seizures. You are a person with dreams, relationships, challenges - not a statistic or stereotype. If you know someone affected, take a moment today to listen, learn, and offer support rooted in compassion.

To learn more, you can visit the Epilepsi Foreningen website. Please be aware that the website is in Danish.