Epilepsy is relentless. It disrupts daily life, creates uncertainty, and impacts the entire family. Seizures can happen anytime—day or night—bringing terrifying moments, emergency responders in the living room, and overwhelming stress. Even after surgery, the journey doesn’t always end. There are medical side effects, developmental challenges, learning difficulties, and endless appointments. Parents are consumed with managing it all, and siblings often feel the impact in ways that aren’t always acknowledged.
As siblings grow into adulthood, their role often shifts. Some take on caregiving or care management responsibilities, especially as parents age or pass away. Navigating these transitions can bring new challenges, emotions, and decisions.
In this Power Hour, Emily Holl, Director of the Sibling Support Project, will facilitate a conversation with adult siblings who grew up in households shaped by drug-resistant epilepsy and epilepsy surgery.
Topics will include:
- The realities of growing up with a sibling whose epilepsy is unpredictable and all-consuming
- The emotional impact of constant medical emergencies and divided parental attention
- How parents can support their other children while navigating epilepsy’s challenges
- The evolving role of siblings in adulthood, including caregiving and long-term care planning
- Honest reflections from adult siblings on what helped and what they wish had been different
This conversation is for caregivers who want to better understand the sibling experience and learn strategies to help navigate the challenges of growing up alongside a sibling with epilepsy. Teen and adult siblings are encouraged to attend, reflect on their own experiences, and know they are not alone.
About our speaker:
Emily Holl is the Director of the Sibling Support Project, a social worker, author, trainer, and sibling advocate. Since 2003, she has worked in the disability field, providing workshops, training, and support for siblings, families, and individuals with disabilities. She has conducted and published research on sibling issues, facilitated future planning workshops for families, and co-facilitated Sibshops for school-age siblings of children with developmental, health, and mental health concerns.
Emily has served as a board member of the Sibling Leadership Network (SLN) and founded sibsNY, the New York chapter of SLN. She has written about her personal sibling experiences in various publications, including Thicker than Water and The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities.
Emily holds degrees from the University of Massachusetts, Columbia University, and Hunter College (CUNY). She previously worked as a social worker in New York City and later as Director of Academic Support at St. Paul College in Minnesota, overseeing disability resources and equity initiatives. She lives in the Greater Seattle area with her husband and two young sons. As the primary family support for her brother, she deeply understands the complexities of the sibling experience and the importance of a strong support network.
