Guest Blog: The Elephant in the Room: Talking Honestly About SUDEP
- Drew Thodeson, MD
- 1 hour ago
- 1 min read
For Epilepsy Awareness Month, Empowering Epilepsy and MBBN Research created a thoughtful conversation about SUDEP and why it needs to be discussed more openly with individuals with epilepsy, families, and clinicians. The blog explains what we know from real-world data and real-world evidence, how SUDEP affects people emotionally, and why clear, patient-centered communication can make care safer.
The piece highlights how stronger collaboration across the epilepsy research ecosystem can support better decision-making, more effective treatments, and meaningful progress in research and development. It also connects to broader goals in the community, including improving data sharing, building useful digital tools, and strengthening the Learning Healthcare System so researchers, clinicians, families, advocacy groups, and industry partners can work together more effectively.
Overall, the full blog reminds readers that talking about SUDEP openly helps people feel supported and informed. Honest conversations can lead to better care, safer environments, and a more connected path toward new therapies and improved quality of life for everyone affected by epilepsy.
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