Epilepsy Sparks Insights

What Life Is Really Like for Families Affected by Dravet Syndrome - Rébecca Hubert

Why Clinicians Must Listen to Families Living With Dravet Syndrome - Prof. Rima Nabbout

Understanding the New Focal Consciousness Classifier - Prof. Sándor Beniczky

The updated seizure terminology aims to make life easier for everyone both affected by focal seizures and those involved in epilepsy care. In this episode, Prof. Sándor Beniczky breaks down why "consciousness" is now the key term used to describe focal seizures, and how it imporves clarity, consistency, and global usability - benefiting those with with an epilepsy, carers, GPs/physicians, nurses, and specialists alike.
We discuss…
why focal "awareness” has been retired
what "consciousness" means during a seizure
the difference between responsiveness and recall
why the number of seizure types has been reduced
how the update strengthens communication at all levels of care
what these changes mean for real clinical practise
how shared language supports better decision-making
🔗 More about episode (inc. transcription) 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/focal-consciousness-seizures-explained
 
🌐 More about Sándor 👇🏻 https://www.torierobinson.com/guests/sandor-beniczky
 
📖 Paper spoken of 👇🏻 https://onlinelibrary.wiley.com/doi/10.1111/epi.18338
 
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🔗 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
 
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Can We Transform Global Epilepsy Care? - Prof. Nicola Specchio

Prof. Nicola Specchio shares insights into how regional and global collaboration can strengthen epilepsy care, highlighting the need for coordinated systems, improved pathways and fairer access to expertise. The episode also examines the impact of emerging scientific developments and how shared standards across countries could support better long-term outcomes for people living with an epilepsy.
We discuss: • Diagnostic delays and treatment access • Priorities for ILAE Europe • Cross-border collaboration • Networks for rare epilepsies • Precision medicine and biomarkers • Neuroimaging developments • Earlier intervention and improved outcomes
Check out:
🔗 More about episode (inc. transcription) 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/global-epilepsy-care-challenges-opportunities 
 
🌐 More about Nicola 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights-guests-/nicola-specichio  
 
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Epilepsy: A New Way to Understand Lived Experience - Cheryl Tveit & Dr. Charbel El Kosseifi

The epilepsies are a complex neurological disease, and patients, families, and clinicians all deserve clear, empowering information! Torie Robinson sits down with nurse, writer Cheryl Tveit and paediatric neurologist/epileptologist writer Dr. Charbel El Kosseifi. from Gillette Children’s Hospital to discuss their new Mac Keith Press book: “Epilepsy”. They explain how they simplified the science for everyone, highlighting crucial topics often ignored in clinic-like morbidities, driving, and the vital need for reassurance. An empowering publication!
 
We discuss:
How the new Gillette Children's Hospital & Mac Keith Press book makes complex epilepsy science accessible for everyone
The importance of plain language - not patronising, just clear
The book's value for med students, residents, and practicing physicians
Quality of life beyond seizures - school, work, relationships & mental health
Cognition, anxiety, and other common comorbidities
Writing with empathy and the voice of families
Why collaboration between patients, clinicians, and educators matters
 
🔗 More about episode 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/epilepsy-book-full-life-guide
 
👤👤 More about Cheryl & Charbel 👇🏻
Cheryl https://www.torierobinson.com/guests/cheryl-tveit
Charbel https://www.torierobinson.com/guests/charbel-el-kosseifi
 
📘 Get the book "Epilepsy" (Mac Keith Press) with 20% off 👇🏻
https://www.mackeith.co.uk/book/epilepsy - code: epilepsysparks20
 
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🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
 
🎧 Watch the video-podcast 👇🏻
https://youtu.be/bHhtMfNxErw 
 
📒 Glossary 👇🏻
https://www.epilepsysparks.com/glossary
 

The Blood-Brain Barrier and Epilepsy! - Dr. Claire Behan & Dr. Chris Greene

This chat delves into the intricate relationship between the blood-brain barrier and epilepsy - particularly temporal lobe epilepsy! Claire, Chris, and Torie highlight the dysfunction of the blood-brain barrier in people with an epilepsy, the role of imaging techniques in assessing this dysfunction, and the outcomes of surgical interventions. Excitingly, Claire and Chris also explore future research directions aimed at targeting the blood-brain barrier to improve treatment outcomes!
🌐 More about the episode 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/claire-behan-chris-greene-blood-brain-barrier-temporal-lobe-epilepsy-neurosurgery 
 
🌐 More about Claire https://www.torierobinson.com/guests/claire-behan 
 
🌐 More about Chris https://www.torierobinson.com/guests/chris-greene 
 
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🎧 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
 
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Understanding the Epilepsy Surgery Journey - Dr. Ricardo Morcos

Around 20–30% of people with an epilepsy don’t respond well to anti-seizure medications - so what happens next? Dr. Ricardo Morcos (UCLH) joins host Torie Robinson to explain the epilepsy surgery journey: how people are assessed, what tests are involved, and how teams make decisions together.
We discuss:
The “tube map”(!) that helps explain this complex process
Why surgery isn’t talked about enough
Common myths & fears
What to expect from surgery & recovery
How neuromodulation, new medications & trials also fit in
This empowering conversation is for anyone affected by the epilepsies - patients, carers, and clinicians alike! Check out: 
🔗 More about episode (inc. transcription) 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/ricardo-morcos-epilepsy-surgery-journey 
🌐 More about Ricardo 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/ricardo-morcos 
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Why Epilepsy Is So Common in UK Prisons - Epilepsy Nurse: Karen McLeod

We discuss:
Why epilepsy is up to four times more common in prison populations
The role of traumatic brain injuries, substance use & mental health
Barriers to accessing epilepsy specialists behind bars
Misuse, mistiming, & under-optimisation of anti-seizure medications
The continued use of rectal diazepam and lack of rescue treatment awareness
Increased SUDEP risks for people with epilepsy in prisons
How NICE guidelines should be improving care - but often aren’t
What needs to change to ensure prisoners get the epilepsy care they are entitled to
 
🔗 More about episode 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/karen-mcleod-uk-prisons
 
More about Karen McLeod 👇🏻https://www.torierobinson.com/guests/karen-mcleod
 
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🎥 Watch the video 👇🏻https://youtu.be/2yKOxliR1pY
 
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary 👇🏻https://www.epilepsysparks.com/glossary
 
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ILAE Academy: Global Training for Epilepsy Clinicians - Prof. Gagandeep Singh

The ILAE Academy is changing how clinicians and researchers learn about the epilepsies! Prof. Gagandeep Singh, Chair of the ILAE Education Council, joins Torie to explain how this innovative, self-paced, and structured platform is helping to shape the next generation of epilepsy specialists!
We discuss:
What the ILAE Academy is and who it’s for
How it keeps up with new discoveries
Why accessibility and affordability matter
The future of interactive, AI-based learning
🔗 More about episode (inc. transcription) 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/gagandeep-singh-ilae-academy 
 
🤩 More about Gagandeep 👇🏻https://www.torierobinson.com/guests/gagandeep-singh 
 
🎓 The ILAE Academy
https://ilae-academy.totaratalent.com 
 
👕 Join the Epilepsy Sparks community with our merch 👇🏻https://epilepsy-sparks.creator-spring.com
 
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🎞️ Watch episode on YouTube 👇🏻
https://youtu.be/PrYZyKrb4Ec 
 
🔤  Learn key terms related to the epilepsies and neuroscience here 👇🏻
https://www.epilepsysparks.com/glossary 
 
📲 Connect with us! 👇🏻
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Carers in Epilepsy: Quality of Life, Hidden Costs & Research - Dr. Florien Boele

How much do carers really contribute to epilepsy care, & why are their struggles so often invisible? 💜
Dr. Florien Boele, a researcher in psychosocial oncology & caregiving, talks about the essential but often overlooked role of unpaid carers for adults with epilepsy.
Florien talks with Torie about:
Who carers are
The staggering £184 billion value that carers add to the UK economy
The personal costs of caregiving - sleep, stress, health, finances & relationships
Why epilepsy research rarely includes carers (compared with other diseases)
The importance of measuring carer outcomes through core outcome sets
Florien’s study to define what truly matters most to carers
👉🏻 Tune in to hear how research is beginning to highlight carers’ voices & why supporting them means supporting people with epilepsy too.
 
🔗 More about episode 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/florien-boele-quality-of-life-carers-epilepsy
 
🤩 More about Florien 👇🏻 Dr. Florien Boele | Family caregiving, quality of life, & the epilepsies — Torie Robinson
 
👕 Join the Epilepsy Sparks community with our merch!👇🏻 https://epilepsy-sparks.creator-spring.com
 
🌐 More Epilepsy Sparks Insights 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights
 
🎧 Watch episode on YouTube 👇🏻https://youtu.be/7F7N3TvnMjM 
 
🔤 Learn key terms related to the epilepsies and neuroscience here 👇🏻https://www.epilepsysparks.com/glossary 
 
📲 Connect with us! 👇🏻
Website https://www.epilepsysparks.com
LinkedIn https://www.linkedin.com/company/epilepsy-sparks
Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
Instagram https://www.instagram.com/epilepsysparks
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TikTok https://www.tiktok.com/@epilepsysparks