Two Perspectives on Dravet Syndrome: Viewpoints from the Clinician and the Caregiver

Dravet syndrome (DS) is a severe genetic epilepsy characterized by early-life onset, seizures, and neurodevelopmental delays that have major impacts on affected children. DS is an incurable condition that requires a lifelong multidisciplinary approach involving both clinical and caregiver support. A better understanding of the multiple perspectives involved in the care of patients is necessary for supporting the diagnosis, management, and treatment of DS. Here we describe the personal experiences of a caregiver and a clinician facing the challenges of diagnosing and treating a patient throughout the three phases of DS. During the initial phase, the main goals include establishing an accurate diagnosis, coordination of care, and communication between clinicians and caregivers. After a diagnosis is established, frequent seizures and developmental delays are a major concern in the second phase, which is very taxing on children and their caregivers, so caregivers require support and resources to advocate for safe and effective care. Seizures may improve in the third phase, but developmental, communication, and behavioral symptoms persist as caregivers navigate the eventual transition from pediatric to adult care. Optimal care for patients is provided when clinicians are well educated on the syndrome and collaboration is established between members of the medical team and family.