Epilepsy Sparks Insights

Epilepsy & Suicide: Breaking the Silence - Milena Gandy & Heidi Munger Clary

Milena Gandy (Clinical Psychologist) and Heidi Munger Clary (Epileptologist) chat with Torie about the intersection of epilepsy and suicide, emphasising the importance of welcoming talking about addressing mental health issues in patients with an epilepsy. They go into the stigma surrounding suicidal thoughts, the need for open conversations between patients and clinicians, and strategies for improving patient care and quality of life. The chat also highlights the upcoming, fun(!) IEC workshop in Lisbon, aimed at enhancing patient-centered communication in epilepsy care.
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Suicide crisis lines 👇🏻
https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines
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🔗 Website & more about Milena Gandy & Heidi Munger Clary 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/milena-gandy-heidi-munger-clary-su!c&&&de-lisbon-iec-2025 
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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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They Aren’t FAKE! Dissociative Seizures/Non-Epileptic Events - Dr. Parthvi Ravat

Neurologist Dr Parthvi Ravat shares the relationship between epilepsy and Non-Epileptic Events* (also known as dissociative Seizures and PNES), symptoms of the latter, treatment options, and the importance of research and awareness in improving patient outcomes. Parthvi highlights the complexities of diagnosing and managing FND and Dissociative Seizures/PNES/Non-Epileptic Events, the need for a multidisciplinary approach, and the shared experiences of patients experiencing both an epilepsy and NEEs!
*A type of Functional Neurological Disorder (FND)
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🔗 Website & more about Parthvi: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/parthvi-ravat-fnd-functional-neurological-disorder 
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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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Migraine & Epilepsy: Best Friends - Lucas Orellana

Adult neurologist and epileptologist Lucas Orellana shares the intriguing connection between migraine and epilepsy! These seemingly distinct neurological conditions share common pathogenic mechanisms, genetics, and treatments and while they are often experienced together there may be challenges in distinguishing between them. Lucas emphasises the importance of personalised treatment plans and the role of lifestyle factors and stress as common triggers.
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🔗 Website & more about Lucas: 👇🏻
http://torierobinson.com/epilepsy-sparks-insights/lucas-orellana-migraine
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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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How To Be Safer During Seizures: SafeSteps! - Daniel Goldenholz

Epileptologist Daniel Goldenholz shares his innovative approach to using 3D printing technology to create practical tools for epilepsy care! He tells us about the evolution of his products - designed to assist caregivers/public during seizures. He also explains how accessible, customisable, and durable they are, and chats about the importance of community engagement and collaboration to spread awareness and provide support for those affected by an epilepsy!
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🔗 Safesteps platform 👇🏻
https://sites.google.com/site/danielgoldenholz/Home/safesteps-platform 
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🔗 Website & more about Daniel 👇🏻
 
https://www.torierobinson.com/epilepsy-sparks-insights/daniel-goldenholz-safesteps
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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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Flaccid? Dry? Disinterested? There’s Help! - Jenny Edwards

Epilepsy Specialist Nurse Jenny Edwards, shares how she supports people who experience sexual dysfunction and epilepsy, focusing on the importance of open communication and building trust with patients. She emphasises the need for a holistic approach to care, including mental health support, and the significance of understanding the different types of epilepsy and their impacts on patients' lives. The chat highlights the challenges patients face in discussing sensitive topics and the vital role nurses play in facilitating these conversations.
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🔗 Website & more about Jenny: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/jenny-edwards-flaccid-dry-disinterested 
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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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Let’s Talk About Sex - Jenny Edwards

Sex! It's a key part of the lives of homo sapiens - including those with an epilepsy! Epilepsy Specialist Nurse Jenny Edwards shares how sexual dysfunction is more common in people with an epilepsy and how she provides support to her patients affected - whether issues be libido, dating, arousal, orgasm, penetration, masturbation, emotional relationships - anything, really! This is part 1 of 2 with Jenny.
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🔗 Website & more about Jenny: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/
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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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Join Us at the Epilepsy Specialist Nursing Section - IEC 2025! - Patty Shafer & Ludivine Rohrer

We hear about the upcoming International Epilepsy Conference (IEC) 2025 in Lisbon - with global lead Epilepsy Specialist Nurses Patty Shafer and Ludivine Rohrer! They talk about the Epilepsy Nursing Section at the conference and why people should attend! Each share how they address the emotional and behavioural aspects of epilepsy and even things like physical exercise! They chat about the significance of empowering nurses, sharing knowledge, and addressing often embarrassing topics related to epilepsy. They emphasise the social aspects of living with epilepsy and the importance of education for both patients and families.
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🔗 Website & more about Patty and Ludivine: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/patty-shafer-ludivine-rohrer-iec-2025-lisbon-epilepsy-nursing-section
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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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🔗 Register for the Nursing Symposium 👇🏻
https://www.ilae.org/congresses/36th-international-epilepsy-congress/section/sectionid/1 
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Why We Need Epilepsy Nurses! - Ludivine Rohrer & Patty Shafer

Epilepsy specialist nurses (ESNs) play a multifaceted role…! Hear all about it from ESN’s Ludivine Rohrer and Patty Shafer who share their responsibilities in patient care, education, and psychosocial support. They also provide insights into the challenges faced by patients and families trying to manage an epilepsy (including all symptoms and morbidities) and emphasise the importance of personalised care for everyone.
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🔗 Website & more about Patty & Ludivine: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/patty-ludivine-ludivine-rohrer-being-epilepsy-nurse 
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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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What is “Consciousness” When It Comes To Seizures?! - Dr. Kaley Marcinski Nascimento

What is consciousness?! Paediatric resident Dr. Kayleigh Marcinski Nascimento invites you to take part in a new study aimed at understanding the terminology surrounding “consciousness” during focal  (formerly known as partial) seizures; emphasising the need for clear communication between clinicians and caregivers! The chat also covers the importance of diverse input in research and how the data collected will be used to improve patient care.
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🔗 Link to study - take part! 👇🏻
www.surveymonkey.com/r/epilepsytalk 
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🔗 Website & more about Kaley Marcinski Nascimento: 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/kaley-marcinski-nascimento-consciousness 
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
www.epilepsysparks.com/glossary 
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Zebrafish - Breakthroughs In Epilepsy Drug Discovery?! - Prof. Deborah Kurrasch

Neuroscientist Deborah Kurrasch talks about her cool research into the epilepsies using zebrafish! She explains the challenges faced in acceptance of using zebrafish as a model system for epilepsy research and shares how we need to explore new mechanisms of action if we are going to figure out how to help the remaining 30% of people who cannot (yet!) have their seizures controlled using anti-seizure medications!
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🔗 Website & more about Deborah: 👇🏻
https://torierobinson.com/epilepsy-sparks-insights/deborah-kurrasch-zebra-fish-dee-pharma 
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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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