Did you know seizure diaries in LGS & Dravet often capture less than half of seizures?! Today we hear from Dr. Ewan Nurse, an engineer & epilepsy researcher in Melbourne, who shares research into seizure reporting in developmental & epileptic encephalopathies (DEEs).

We explore why seizure diaries miss so many seizures, how carers sometimes log non-seizure events, and what that means for families and clinicians. Ewan also talks about the promise & limits of wearable devices, EEG headbands & implants, and why collaboration between engineers, clinicians, carers & families is essential for the future of epilepsy care.

🌐 More about Ewan👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/ewan-nurse-seizure-diaries-eeg-dees-dravet-lgs

🌐 More Epilepsy Sparks Insights 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights

👕 Check out our cool merch 👇🏻

https://epilepsy-sparks.creator-spring.com

🎧 Listen to the podcast 👇🏻

https://epilepsysparksinsights.podbean.com

📖 Chapters

00:00 Intro

14:30 Understanding Developmental and Epileptic Encephalopathies

17:57 Future of Seizure Tracking Technology

21:01 Collaboration Between Clinicians and Engineers

23:52 The Broader Impact of Epilepsy Beyond Seizures

00:00 Conclusion & Thanks

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary

📲 Join us on social media!

- LinkedIn https://www.linkedin.com/company/epilepsy-sparks

- Bluesky https://bsky.app/profile/epilepsysparks.bsky.social

- Instagram https://www.instagram.com/epilepsysparks

- Facebook https://www.facebook.com/epilepsysparks

- TikTok https://www.tiktok.com/@epilepsysparks

In this first half of our chat with Dr. Ewan Nurse, we explore why seizure reporting matters so much in epilepsy care. From forgotten focal seizures to the challenges of eyewitness accounts, Ewan explains why accurate seizure diaries are vital yet so difficult to achieve. We discuss research findings showing that most minor seizures go unreported(!), why some go over-reported(!), the role of memory, stigma, and psychology in diary-keeping, and the importance of involving carers in the process.

🌐 More about Ewan👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/ewan-nurse-seizure-diaries-silent-witness

🌐 More Epilepsy Sparks Insights 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights

👕 Check out our cool merch 👇🏻

https://epilepsy-sparks.creator-spring.com

🎧 Listen to the podcast 👇🏻

https://epilepsysparksinsights.podbean.com

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary

📲 Join us on social media!

- LinkedIn https://www.linkedin.com/company/epilepsy-sparks

- Bluesky https://bsky.app/profile/epilepsysparks.bsky.social

- Instagram https://www.instagram.com/epilepsysparks

- Facebook https://www.facebook.com/epilepsysparks

- TikTok https://www.tiktok.com/@epilepsysparks

In this second episode with Dr Phillip Pearl, we explore the human side of rare epilepsies: what drives him as a paediatric neurologist, how advocacy transforms progress, and why research in ultra-rare conditions can change the lives of people with common disorders. We also tackle difficult but vital topics - SUDEP, depression, and suicide in epilepsy - and end on a hopeful note with music and the brain!

🌐 More about Phillip 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/phillip-pearl-rare-epilepsies-sudep-neurology-journey

👕 Check out our cool merch 👇🏻

https://epilepsy-sparks.creator-spring.com

🌐 More Epilepsy Sparks Insights 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights

🎧 Watch the chat on YouTube 👇🏻

https://youtu.be/scBYPashBAs

📖 Chapters

00:00 – Intro

00:56 – Meet Dr Phillip Pearl

01:17 – What keeps you going, as a paediatric neurologist

03:19 – Choosing paediatric neurology

05:06 – Falling in love with neurology

06:25 – Future of metabolic epilepsies

07:30 – Gene therapy breakthroughs

09:44 – SUDEP & risk awareness

11:18 – Depression, mortality, & suicide in epilepsy

11:55 – The intersection of music and epilepsy

12:28 – Conclusion & thanks

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary

📲 Join us on social media!

- LinkedIn https://www.linkedin.com/company/epilepsy-sparks

- Bluesky https://bsky.app/profile/epilepsysparks.bsky.social

- Instagram https://www.instagram.com/epilepsysparks

- Facebook https://www.facebook.com/epilepsysparks

- TikTok https://www.tiktok.com/@epilepsysparks