From Seizures to Running a Marathon: Living With Juvenile Myoclonic Epilepsy (JME) | KCNA2 Podcast

What is it like to be diagnosed with Juvenile Myoclonic Epilepsy (JME) as a teenager and then learn to advocate for yourself, explore new treatment options, find community, and build a life beyond epilepsy? In this episode of The KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra talks with Chevy White, a young adult living with Juvenile Myoclonic Epilepsy (JME) and an epilepsy advocate involved with the Epilepsy Foundation’s Research Ambassador Program. Chevy was just 15 when he experienced two seizures in one day, including a tonic-clonic seizure in the middle of his high school geometry class. He shares what it was like to receive an epilepsy diagnosis as a teenager, navigate medication trials and side effects, and cope with the uncertainty of how epilepsy might affect school, driving, college, relationships, and independence. Chevy also describes experiencing “jamais vu” as an aura, what having and recovering from a seizure feels like for him, and the impact epilepsy can have even when someone isn’t actively having a seizure. After trying multiple medications and continuing to experience drug-resistant epilepsy, Chevy eventually underwent vagus nerve stimulation (VNS) surgery. He discusses how he uses his VNS magnet when he recognizes an aura and the difference the treatment has made in his life. About a year after receiving his VNS, Chevy accomplished something remarkable: he ran a marathon. The conversation also explores other approaches that may be discussed in epilepsy care, including the ketogenic diet and neuromodulation devices such as VNS, DBS, and RNS. Beyond treatment, Chevy talks about something equally important: finding people who understand. After feeling increasingly isolated following his epilepsy diagnosis, he found community through the Epilepsy Foundation and eventually became involved in epilepsy advocacy and the Research Ambassador Program, where people with lived experience help advance epilepsy research and awareness. LEARN MORE ABOUT THE RESEARCH AMBASSADOR PROGRAM: https://www.epilepsy.com/research-fun... Whether you’re living with Juvenile Myoclonic Epilepsy, parenting a teenager with epilepsy, supporting someone with seizures, or working within the rare epilepsy community, Chevy’s story is a reminder of the importance of asking questions, learning about available options, finding community, and becoming an active participant in your own care. Please remember that epilepsy treatment is highly individualized. Treatments discussed in this episode may not be appropriate for everyone. Decisions about medications, dietary therapies, implanted devices, or other interventions should be made with a qualified medical professional who understands the individual’s medical history. If this conversation helps you, please subscribe, leave a comment, and share this episode to help more people learn about Juvenile Myoclonic Epilepsy and connect with the epilepsy community. To learn more about the KCNA2 Epilepsy Community, visit our website https://www.kcna2epilepsy.org/ CHAPTERS 00:00 From seizures to running a marathon 00:19 Welcome to The KCNA2 & Rare Epilepsy Podcast 00:41 Meet Chevy White 01:50 Juvenile Myoclonic Epilepsy (JME) 03:45 Chevy’s first seizure in high school 04:08 Experiencing jamais vu before a seizure 05:25 A tonic-clonic seizure and waking up in an ambulance 06:06 CT scan, MRI, EEG, and diagnosis 07:04 Returning to school the next day 08:27 Two seizures in one day 10:23 Generalized epilepsy and seizure auras 11:29 What is jamais vu? 14:16 Using VNS when an aura begins 14:59 How vagus nerve stimulation works 16:36 Chevy’s experience with VNS 18:10 Neuromodulation and caring for children in the ICU 18:43 What is deep brain stimulation (DBS)? 19:06 DBS, RNS, and neuromodulation 21:34 Why Chevy chose VNS 22:05 Drug-resistant epilepsy and additional treatment options 24:12 What does having a seizure feel like? 25:21 Seizure safety and recovery 26:32 Behavioral and mental health effects after seizures 27:44 How epilepsy affects everyday life 29:18 Epilepsy, high school, and feeling isolated 30:48 Finding community through the Epilepsy Foundation 32:26 Life as a young adult with epilepsy 34:11 Advice for parents of teens with epilepsy 34:54 Exploring options beyond medication 35:43 From seizures to running a marathon 36:10 Self-advocacy and asking about treatment options 37:42 Finding support and community 38:45 Continuing Chevy’s advocacy story 39:27 Closing #JuvenileMyoclonicEpilepsy #JME #Epilepsy #EpilepsyAwareness #EpilepsyAdvocacy #ResearchAmbassador #EpilepsyResearch #EpilepsyFoundation #RareEpilepsy #KCNA2 #LivingWithEpilepsy #VNSTherapy #VagusNerveStimulation #DrugResistantEpilepsy #SeizureAwareness