Taking the Critical First Step

Despite how often SUDEP occurs, healthcare providers are hesitant to discuss SUDEP with people with epilepsy.

According to Wendy Miller, PhD, RN, CCRN, assistant professor, Department of Science of Nursing Care at Indiana University School of Nursing, "The consequence of providers' hesitance to discuss SUDEP is that patients and their family members are uninformed about the possibility of sudden death due to epilepsy, whether from SUDEP or other causes of epilepsy-related mortality (e.g., status epilepticus, accidental drowning, suicide). For example, several medical examiners told us that they avoid SUDEP on death certificates since they have occasionally had families who are adamant that their neurologists told them that seizures are never fatal."¹

What People with Epilepsy and Caregivers Think

Survey results showed that 95% of caregivers of people with epilepsy worry about the person in their care dying from epilepsy or seizures. When asked about SUDEP awareness, however, the majority of both people with epilepsy and caregivers reported that they had not had a discussion about SUDEP with a healthcare provider.

Importantly, 40% of respondents with epilepsy stated that learning more about SUDEP could make a difference in how they approach seizure control. And, nearly half of the respondents who were caregivers stated that learning more about SUDEP could make a difference. These respondents stated that the knowledge could positively impact seizure management in caring for people with epilepsy.

Resources for Professionals

One of the primary initiatives of Epilepsy Foundation SUDEP Institute is to drive SUDEP education and awareness programs to people touched by epilepsy and to medical professionals.

Current resources include:

• Infographics, specifically the "Managing Epilepsy and Seizures" infographic that has successfully educated people about seizure safety and the "#DareTo Say SUDEP" infographic that focuses specifically on the risk for SUDEP and empowers people to decrease the risk
• Webinars and presentations, including "SUDEP Counseling" that was developed to guide medical professionals on how to talk to their patients about SUDEP
• The Partners Against Mortality in Epilepsy (PAME) conference, a multi-day learning event and the only meeting focused exclusively on increasing understanding of mortality in epilepsy, including SUDEP. Their site includes meeting presentations as well as the PAME webinar series.

Learn about other resources and SUDEP webinars and presentations. Connect with your local Epilepsy Foundation for additional information and support.

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