Understanding Epilepsy Through Empathy and Innovation
By Brad Chapman, Head of U.S. Epilepsy and Rare Syndromes at UCB
We’re all shaped by our unique backgrounds, which affect how we view the world. This idea is especially important in healthcare, where understanding different perspectives helps us serve patients better. I’m passionate about helping those with epilepsy and rare epilepsy syndromes. While I enjoy history, food, and ancient Greek philosophy, these interests shape who I am and how I approach my work.
Socrates, a philosopher interested in morality and diverse thinking, inspires me. His focus on virtues like curiosity and courage helps guide us in understanding the world and interacting meaningfully with others.
When I joined UCB over 15 years ago, I knew about epilepsy from a scientific standpoint but not about the daily experiences of those living with it. That changed when I spent three days with people affected by epilepsy, listening to their stories. I met individuals facing significant challenges, like a single mother managing seizures or a teenager hiding their condition due to stigma. I also learned about the severe impact of rare conditions like Dravet and Lennox-Gastaut syndromes, which involve frequent seizures and developmental issues.
These experiences showed me that understanding epilepsy requires more than just medical knowledge. We need qualities like humility and curiosity to truly grasp the diverse experiences of those affected.
Representation and inclusion are essential in healthcare. While there’s a lot of talk about these topics, action is needed. At UCB, we focus on understanding the unique experiences of people with epilepsy and rare syndromes. This approach helps us make real, positive changes.
We recently shared studies at the 2024 American Epilepsy Society Meeting, driven by curiosity to understand specific patient populations. For example, one study looked at women with epilepsy and their experiences during motherhood, revealing fears about treatment changes and lack of information. Another study examined how prolonged seizures affect quality of life, highlighting the emotional and mental health challenges faced by patients and caregivers.
By listening to these experiences, we can innovate treatments that not only reduce symptoms but also improve overall quality of life. We aim to let people focus more on living than on their condition.
Combining personal insights with scientific research allows us to tailor our interventions effectively, improving care for people with epilepsy and rare syndromes. By leading with courage and curiosity, we can create an empathetic environment where those affected feel seen and heard. They are more than just patients; they are individuals with rich, full lives. By embracing their stories, we can develop meaningful solutions that truly resonate with them.