Epilepsy Stories and the Research Making a Difference

This week on Seizing Life we present short videos about three key areas of epilepsy research on which we focus: Post-Traumatic Epilepsy (PTE), Sudden Unexpected Death in Epilepsy (SUDEP), and Refractory (or Drug-Resistant) epilepsy. Each video tells the personal epilepsy story of a community member and offers information and insights from a CURE Epilepsy-funded researcher working in that area.

Our first story focuses on U.S. Army Captain Patrick Horan and his journey with Post-Traumatic Epilepsy (PTE) following a traumatic brain injury (TBI) that he suffered while serving in the Iraq War. Dr. Pavel Klein, Director of the Mid-Atlantic Epilepsy and Sleep Center, provides background on PTE and discusses the research he is currently conducting that may one day help prevent TBI from becoming PTE.

The second story highlights SUDEP. Though his seizures were well-controlled, Anthony Maffie passed away from SUDEP when he was only 22 years old. His mother and his aunt tell Anthony’s story, discuss what they wish they had known, and share how they keep his memory alive by raising funds for SUDEP research. Dr. Nuria Lacuey explains what we know about SUDEP, what can be done to mitigate risks, and what we hope to learn through research to help prevent SUDEP in the future.

Our final story focuses on Channing Seideman and her journey with refractory (or drug-resistant) epilepsy. Channing discusses how it impacts her day-to-day life, and why it’s important for her to support epilepsy research. Dr. Detlev Boison explains drug-resistant epilepsy and discusses the pre-clinical research study he is currently conducting with the goal of understanding how to block the enzyme that prevents the brain’s natural seizure-terminator, adenosine, from working properly.

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