Speaking Up About SUDEP: Two Mothers’ Stories

Sudden Unexpected Death in Epilepsy, or SUDEP, is the most devastating outcome that can occur as a result of epilepsy. Yet, physicians often avoid discussing it with newly diagnosed patients. Doctors may not wish to upset patients who may already be experiencing the stress and uncertainty that comes with a new epilepsy diagnosis or they may feel that the risk of SUDEP is low and thus don’t want to potentially scare the patient. However, new data indicate that SUDEP occurs in approximately 1 in 1000 adults and children with epilepsy. Guidance on risk factors for SUDEP and possible ways to mitigate these risks is available. Yet, if information about SUDEP is not shared with patients and families, they can’t make choices to reduce the risk.

On this episode of Seizing Life, Libby Boyce and Jessica Brandes, two mothers who each lost a son to SUDEP, discuss how they hope to transform tragedy and grief into action and change. Libby Boyce’s son Cameron passed away from SUDEP in July 2019.  He was only 20 years old.  A month later, in August of 2019, Jessica Brandes lost her 8-year-old son Wiley to SUDEP.  Neither family had been told about the risk of SUDEP.

What should a patient be told about SUDEP? Libby and Jessica tell their stories, discuss what they were and weren’t told about their sons’ epilepsy, and outline what should be done to build awareness of SUDEP in both the epilepsy and medical communities. Gain perspective on this very difficult, but critically important topic from two moms who want to bring an end to SUDEP through awareness, change, and research.

Learn more about breathing dysfunction caused by seizures, and data for breathing dysfunction as a possible means to intervene and prevent SUDEP, in our webinar Breathing and SUDEP: Research & the Influence of Seizures on the Respiratory System.

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