Family Burden and Quality of Life in Dravet Syndrome

This segment examines the profound and ongoing impact of Dravet syndrome on families, highlighting how the condition reshapes daily life, relationships, and long-term priorities. Caregivers describe how the diagnosis affects not only parents but siblings, extended family members, and family dynamics as a whole. The discussion underscores the emotional, physical, and logistical demands of caregiving, including career disruptions, reliance on family support, and constant vigilance around seizure risk. Parents share how siblings often mature quickly, taking on responsibilities and adapting to medical emergencies at a young age. The segment also addresses the challenges of living as a partially fragmented family unit, where safety considerations limit shared activities and require difficult trade-offs. While acknowledging the isolation, exhaustion, and chronic stress that accompany Dravet syndrome, caregivers also reflect on the empathy, resilience, and perspective gained through the journey, emphasizing the importance of presence, adaptability, and day-to-day perseverance.