As a caregiver for a child or adult with Dravet syndrome, it is normal to have feelings of anger, depression, and resentment. The emotional role of caregiving is stressful and can be overwhelming. Caregiver burnout is real, so it is important to find emotional support and the resources you need to prioritize your mental health and well-being. DSF is proud to announce its newest resource that addresses the real struggles caregivers face to help support and empower our patient family community.
Caregiver Connect is a unique program with a focus on helping families manage the caregiver burden and stress that accompanies caring for a child or adult with a rare epilepsy who has complex lifelong medical needs. It offers a series of educational videos on a variety of topics, as well as coordinating tip sheets. Videos feature facilitators from The Center for Pediatric Traumatic Stress at The Children’s Hospital of Philadelphia and Nemours Hospital for Children, Delaware, as well as patient families from the Dravet syndrome community. The modules are broken down into four important topics: Taking Care of the Caregiver; Caregiver Burnout; Communicating Emotions, Needs & Concerns; and Managing Grief. We understand that as caregivers, your lives are busy and free time is limited, so these videos are available to view on demand as your schedule allows.
Special thanks to our family participants who have honestly and openly shared their personal experiences and struggles for this series. This program is fully funded through a generous educational grant from Jazz Pharmaceuticals.
