Each of us is the product of our own unique combination of identities, experiences, and interests, ultimately informing, or at a minimum influencing, our perspectives on different virtues. This is something that I’ve been thinking more about when it comes to the importance of representation and inclusion in healthcare and the collective work we do, rooted in serving patients. Professionally I am passionate about bringing solutions to people with epilepsy and rare epilepsy syndromes. Personally, I am a fan of history, a lover of great food, and, in large part due to a few college courses, I still enjoy the occasional literary works of ancient Greek philosophers such as Plato and Socrates. While no single one of these defines me entirely, each of them contributes in some way to the person I am, the choices I make, and how I experience and perceive the world around me. 

One of the reasons I still enjoy reading Socrates is that he was a philosopher focused on morality, who also understood and valued diversity of thought. Unlike others drawn to mathematics or science, he focused on exploring how one should live, prompting others to engage in discussions about various qualities within, such as, curiosity, justice, and courage. It is argued that these are the virtues that drive us to understanding of the world around us, shaping our actions and guiding us toward more meaningful and impactful interactions.

When I began at UCB over 15 years ago, my understanding of epilepsy and the lived experience of those with the condition was academic, at best. I could tell you generally about the science behind the disease, the electrical disruptions happening in a person’s brain when they experience a seizure, and potential solutions available for different seizure types. However, I wasn’t aware of the true lived experience of someone with epilepsy. That completely changed for me when, in my first week at the company, I had the opportunity to spend three full days – 72 hours – getting to know people living with and caring for those with epilepsy. Honestly my first reaction was – are we allowed to do this? Not once in all my years in pharma had I experienced an opportunity to sit with, engage in conversations, and simply listen to a first-person account of the varied ways that the condition affects so many aspects of their day-to-day lives.

Some of those individuals faced significant challenges because of their epilepsy: a single mother who tirelessly juggled her busy schedule with the uncertainty of when the next seizure would occur, a teenager plagued by stigma who retreated to the school bathroom to hide their disease, an individual who struggled to find employment as they searched fruitlessly for years to find a treatment to control their seizures. Flash forward several years when UCB entered into the rare epilepsy space, and I met caregivers whose lived experiences were unlike any other I had ever encountered. With 24/7 care of their loved one, Dravet syndrome and Lennox-Gastaut syndrome are often characterized by hundreds of seizures per day and cognitive and developmental delays, along with sleep and behavioral issues. The simple things we may not think twice about like hearing a child say, “I love you,” they may never experience. In all of these interactions, there were stories of fear, anxiety, and hopelessness. While these people shared symptoms from a clinical perspective, their stories, struggles, and personal experiences showed how varied the effects of these conditions can be. It left me humbled and in awe of their perseverance and opened my eyes to what are extremely complex conditions to manage well beyond seizures alone.

Seeing firsthand how epilepsy or a rare epilepsy syndrome can look for people from a wide range of backgrounds was a profound moment for me. It helped me to realize that it’s only when we let humbleness, curiosity and courage – qualities described by the Stoics – guide us to understand the diverse experiences of people impacted by a condition, that we can truly understand the needs and ultimately the disease itself. And we know from history that curiosity drives innovation which in turn helps us pursue holistic treatments that focus on overall quality of life.

Having a seat at the table no matter who you are is critical to move the needle for any situation. While representation and inclusion have become significant topics of conversation within this industry, some argue that the depth of action has yet to match the breadth of conversation. From where I stand as a leader in healthcare, I believe every decision should be traced back to the person living with the disease or the caregiver that devotes 24/7 to their loved one. This is why at UCB we focus so much of our efforts on understanding the unique lived experiences that span across epilepsy and rare syndromes such as Dravet and Lennox-Gastaut. Having the opportunity to interact with these individuals and healthcare providers and really learning and engaging in the conversation can help us make meaningful and positive changes.

We need to continue to build bridges and connect with people living with epilepsy and rare syndromes and their caregivers, creating opportunities for their voices to be heard. UCB recently shared data at the 2024 American Epilepsy Society Meeting in LA from several studies and analyses where curiosity was a driving force to understand certain patient populations. For example, one study focused on the experiences of women of childbearing age with epilepsy throughout their motherhood journey. The social listening study showed that there is uncertainty and fear surrounding changes in treatment regimen in addition to the disparity and lack of information from healthcare professionals.¹ Another focused on the impact of prolonged seizures (PS) on patients’ and caregivers’ quality of life (QoL). We conducted interviews and focus groups with adults living with epilepsy and caregivers of people with epilepsy aged 12 or older to identify unmet needs, determine the greatest areas of burden, and assess the impact on QoL of PS, which typically last ² or more minutes and usually do not stop on their own or worsen over time. The greatest challenges mentioned by people with epilepsy and caregivers were the profound effects of PS on their emotional well-being and mental health.2 If major life decisions – like if-and-when to have children – are affected by symptoms of epilepsy or the way that care is delivered, we can apply those insights into the ways we innovate and approach this disease. We want to make sure our treatments make a real and meaningful change for people, not just by reducing symptoms, but by letting them spend more time living and less time thinking about their condition. Ensuring that their voice is heard, and their experiences are included, only help us in delivering true and lasting change.

When these experiences and insights are combined with the scientific work we do, we can begin to tailor our interventions more effectively, addressing key barriers to improve the overall care ecosystem for people living with epilepsy and rare syndromes.

By taking an approach that leads with courage and curiosity, appreciating different perspectives to truly get to know the communities we serve in a more personal way, we can foster a more empathetic and inclusive environment. One where people impacted by epilepsy and rare epilepsy syndromes not only feel seen and heard, but act as stewards of innovation that meets their unique needs. They are not just patients living with or caring for someone with epilepsy or a rare epilepsy syndrome. They are teachers. They are lawyers. They are writers and directors. They are individuals with rich, multifaceted lives, and by embracing their stories, we can create meaningful solutions that truly resonate with who they are.

References:

1. Baker G, et al. What Are the Experiences of Women of Childbearing Age With Epilepsy Throughout Their Motherhood Journey? Results From a Social Media Listening Study [poster]. Presented at: The American Epilepsy Society (AES) Annual Meeting, December 6-10, 2024; Los Angeles, CA, USA; Poster 2.284.
2. Kaye D, et al. Impact of Prolonged Seizures on Patients’ and Caregivers’ Quality of Life [poster]. Presented at: The American Epilepsy Society (AES) Annual Meeting, December 6-10, 2024; Los Angeles, CA, USA; Poster 1.100.

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