Conversations about SUDEP with Families Facing Dravet syndrome

This segment focuses on the sensitive but critical topic of SUDEP and how it is addressed with families affected by Dravet syndrome. Dr. Joseph Sullivan describes how advances in genetic testing have led to earlier referrals and more direct conversations about diagnosis, prognosis, and risk. He reflects on how his clinical approach has evolved, shaped by family feedback and the recognition that caregivers often learn about SUDEP through informal sources before hearing it from clinicians. Caregivers share their experiences of first learning about SUDEP, describing feelings of shock, fear, and emotional overload at the time of diagnosis. They discuss how conversations about SUDEP were not always immediate but became essential as understanding deepened. Families also describe the practical steps taken to reduce risk, such as nighttime monitoring, while emphasizing the constant vigilance and anxiety that accompany nocturnal seizures. This segment highlights the balance clinicians must strike between compassion and transparency, and underscores the lasting emotional impact SUDEP awareness has on families living with Dravet syndrome.