Actors Karan Brar and Sophie Reynolds, co-hosts of “The Now What Podcast: Young Adults and Epilepsy,” discuss the biggest challenges facing people with epilepsy and what the public should know to provide better support.
What inspired you to start “The Now What Podcast”?
Karan Brar: With the rise of podcasts, we wanted to create a meaningful platform for discussing epilepsy. Our goal was to engage listeners with the Cameron Boyce Foundation by offering clear, relatable information, like speaking to a peer. That’s how “The Now What Podcast: Young Adults and Epilepsy” came about. Each episode focuses on a theme, featuring conversations with peers and specialists. It’s a crash course for those newly diagnosed, helping them understand their diagnosis without overwhelming them and giving them a foundation to build on.
Sophie Reynolds: Many epilepsy podcasts focus on older adults or parents, so we wanted to create a space for younger voices. Our podcast blends serious discussions with medical professionals and lighter episodes on lifestyle, showing how epilepsy fits into everyday life. It’s about balancing the challenges with the realities of living with epilepsy, making the experience relatable and engaging.
What do you think are the biggest knowledge gaps about epilepsy and what can we do to close those gaps?
SR: A major gap in understanding epilepsy is the many misconceptions, like the different types of seizures and what causes them. It’s an individual condition, and the stigma often prevents people from asking questions. One key area we focus on is SUDEP (Sudden Unexpected Death in Epilepsy), which is underreported and not fully understood. To close these gaps, we need open conversations and for people to educate themselves. This allows us to support each other and make it easier for those with epilepsy to share their experiences.
KB: The conversation about epilepsy often feels one-sided — either it’s avoided, or young people with epilepsy are overly coddled. This can be isolating. The solution is honest, open conversations that help both sides understand the condition’s nuances. As Sophie said, epilepsy is highly individual, with unique triggers and experiences. Our goal is to support young people with epilepsy while ensuring they feel free and not defined by their condition.
What do you think are the most important things someone living with epilepsy — or someone who knows and supports someone with epilepsy — should understand about the condition?
KB: Epilepsy is unique to each individual, and it’s important to discuss it openly. A moment that stood out to me was when I told my mom about Cameron’s epilepsy, and she assumed medication was the end of it. But epilepsy is ongoing — it requires evolving treatment and understanding as the person’s needs change. It’s crucial to keep this in mind to ensure ongoing support.
SR: People with epilepsy can still live fulfilling, vibrant lives. While it can be challenging, it doesn’t have to limit you. For those newly diagnosed, I recommend seeing an epileptologist, who specializes in epilepsy and can provide more tailored care than a general neurologist. This can make a big difference in managing the condition.
Do you have any advice on how people can be more open in talking about epilepsy?
SR: My advice is to start by having open conversations about epilepsy, even if it feels uncomfortable. As a friend, knowing how to help gives me peace of mind. People with epilepsy often fear burdening others, but it’s the unknown that scares us. That first conversation is tough but crucial — once it’s had, it strengthens relationships and reduces fear.
KB: For young people, talking openly about epilepsy with loved ones is important, but it’s about balance — your needs are considered without feeling overly protected. It’s like accommodating dietary restrictions — thoughtful, but not burdensome. If you’re nervous, try different ways to start the conversation. We even have a letter template on our website to help you begin.
What are some of the challenges people living with epilepsy face in their daily lives, and how can friends, family, and communities provide better support?
KB: A major challenge for people with epilepsy is finding the right medication. It can be time-consuming and difficult, especially when medications lose effectiveness over time. Additionally, managing symptoms often involves diet and routine changes that require constant attention. Friends and family can help by being patient, understanding, and offering consistent encouragement. Small acts of support can ease this burden.
SR: Even with seizures under control, there’s always the possibility of another one. For those still struggling, the challenges are even greater. To support someone, learn seizure first aid and understand their care plan — like knowing if they need emergency medication or have specific preferences for who to contact. Recognizing triggers, which vary from person to person, is also key. Epilepsy can feel isolating, so offering empathy and support is crucial. I also recommend exploring our Facebook support groups to connect with others who understand these challenges.
Do you have any advice on resources that can help individuals find the right medication for their needs or guidance on how to approach this conversation with their healthcare provider?
KB: Finding the right medication starts with consulting the right specialist, like an epileptologist. They offer expertise specific to epilepsy, helping to fine-tune your care plan beyond just medication. Don’t get discouraged if the first treatment doesn’t work — it often takes trial and error. Keep communication open with your healthcare provider and trust that the right option will come.
What’s one actionable step you’d encourage our readers to take to support individuals living with epilepsy?
SR: I recommend visiting the Cameron Boyce Foundation website to learn about epilepsy and how to help during a seizure. Understanding epilepsy and knowing what to do in an emergency makes you more prepared. For example, we had a friend at a concert who knew how to help during a seizure because he educated himself. Education helps you support others and makes conversations about epilepsy easier. My advice: take the time to learn and share that knowledge.
Is there anything else that readers should know?
KB: We’re focused on building a community and actively engaging with our followers on Instagram and Facebook. The journey of young adults with epilepsy is still underexplored, so we want to hear from you — your experiences, challenges, and what support you need. Don’t hesitate to reach out; we’re here to listen and help in any way that we can.
