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

• DOI: 10.1007/s40120-023-00450-3
• Publication Date: 2023-02-16T10:03:07Z
• Authors: Judith Bluvstein; Susanna Wenniger
• Keywords: Dravet syndrome; Viewpoints; Caregiver Burden

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