**Understanding Epilepsy: A Personal and Professional Perspective**
**By Brad Chapman, Head of U.S. Epilepsy and Rare Syndromes, UCB**
Our unique backgrounds shape how we see the world, which is something I think about often, especially regarding representation and inclusion in healthcare. My work focuses on finding solutions for people with epilepsy and rare epilepsy syndromes, driven by a desire to understand and serve patients better.
My interest in ancient Greek philosophers like Socrates, who valued diverse thoughts and questioned how we should live, influences my approach. Socrates believed in discussing values like curiosity, justice, and courage, which help us understand and interact meaningfully with the world.
When I started at UCB over 15 years ago, my knowledge of epilepsy was mostly theoretical. But during my first week, I spent 72 hours with people living with epilepsy, which was eye-opening. I heard firsthand about the challenges they face, such as a single mother managing life with uncertain seizures, a teenager hiding their condition due to stigma, and a job seeker struggling to find work while searching for effective treatment.
Meeting people with rare syndromes like Dravet and Lennox-Gastaut, which involve frequent seizures and developmental challenges, further broadened my understanding. These experiences highlighted the complex realities of living with these conditions and the resilience of those affected.
Seeing the diverse experiences of people with epilepsy reinforced the importance of humility, curiosity, and courage—qualities that help us understand the real needs of those affected. This understanding can drive innovation in treatments that improve quality of life.
Representation and inclusion are crucial in healthcare. Every decision should consider the people living with the disease. At UCB, we focus on understanding the experiences of those with epilepsy and rare syndromes to make meaningful changes.
Recently, UCB shared research at the 2024 American Epilepsy Society Meeting about the challenges faced by specific patient groups, like women with epilepsy during motherhood. Studies showed their fears and the lack of information from healthcare professionals. Another study explored how prolonged seizures affect emotional well-being and quality of life. These insights help us innovate and improve care.
By prioritizing the voices of those living with epilepsy, we can tailor interventions better, addressing key barriers and improving care for people with epilepsy and rare syndromes.
Leading with courage and curiosity, we aim to create a more empathetic and inclusive environment where people with epilepsy feel seen and heard. They are not just patients but individuals with rich, multifaceted lives, and by embracing their stories, we can develop solutions that truly meet their needs.