"Living with epilepsy should not be a secret": Jessie Nyirenda - encore episode (2022)

Send comments and feedbackSeizure action plans can help people with epilepsy manage their seizures and address emergencies. They often are aimed at a subset of people with epilepsy, particularly children. Dr. Lucretia Long discusses how seizure action plans can be used to engage and educate all people with epilepsy, as well as their families and the larger community.Seizure action plan examples: English, Spanish, Simplified Chinese, Korean, Tagalog, Ukrainian, VietnameseOnline fillable seizure action plan - English (PDF)Plan de acción de incautación en línea  - espanol (PDF)List of published research on seizure action plans Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: [email protected] International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Send comments and feedbackWe discuss the response to the updated classification of seizures with Prof. Eugen Trinka, including why the changes were made and how the changes are being explained and socialized.  Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: [email protected] International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Send comments and feedbackCelebrating International Epilepsy Day (Feb 9) with an episode of strength and hope! Jessie Nyirenda's seizures went undiagnosed for years. She was told she was misbehaving, possessed, and bewitched. She finally diagnosed herself after reading about epilepsy in a library. Taking anti-seizure medication and joining an epilepsy support group changed Jessie's life and made her realize she was no different from anyone else. Now a mother of three and a banking sector specialist, Jessie is active in epilepsy advocacy.IBE toolkit for reducing stigma in Africa Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: [email protected] International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Send comments and feedbackA network of more than 60 expert epilepsy teams across Europe: That's EpiCARE. The network aims to improve care for rare and complex epilepsies and reduce inequalities in access to the best diagnostic and treatment practices and investigational tools. Sharp Waves talked to EpiCARE coordinator Dr. Alexis Arzimanoglou about what EpiCARE is, what it isn't, and how it may contribute to changes in epilepsy care across the region and beyond.For more information:EpiCARE websiteEpiCARE on Instagram (@ern_epicare)EpiCARE webinarsPatient and caregiver resourcesEpiCARE position paper: Areas of research priorities in epilepsy (Epilepsia Open, Jan 2026)The Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases (Dec 2025) Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: [email protected] International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Send comments and feedbackAbout 1 in 5 people with an intellectual disability (ID) also have epilepsy; among those with profound ID, 1 in 2 also will have epilepsy. In general, people with an ID have higher mortality rates and more chronic conditions than people without an ID; they also face significant health care disparities. Researchers interviewed people with both epilepsy and an ID to understand what they knew about their epilepsy, how they accessed care, and what epilepsy-related information they wanted to have. Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: [email protected] International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Send comments and feedbackWhile as many as 1 in 3 first seizures are acute symptomatic seizures, these seizures receive relatively little attention during training. Dr. Ching Soong Khoo speaks with Dr. Marian Galovic about the etiology and management of acute symptomatic seizures and how they may inform outcomes and future epilepsy risk.Mentioned during the episode:The SeLECT Consortium predictepilepsy.com The SeLECT model of developing epilepsy after ischemic strokeThe CAVE model of developing epilepsy after hemorrhagic strokeThe 2HELPS2B score to identify patients most likely to benefit from prolonged EEG Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: [email protected] International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Send comments and feedbackThe latest on Dravet syndrome: Diagnosis, genetic testing, comorbidities, treatment, and more. Dr. Parthvi Ravat interviews Dr. Ingrid Scheffer. Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: [email protected] International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Send comments and feedbackAbout one-third of people with epilepsy will continue having seizures despite medications. What is the clinical definition of drug-resistant epilepsy? Why does it occur, and is it possible to predict? Dr. Cecilie Nome interviews Dr. Patrick Kwan.Relevant papers:Definition of drug resistant epilepsy: Consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies - Kwan - 2010 - Epilepsia - Wiley Online LibraryThe costs of epilepsy in Australia | Neurology Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: [email protected] International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Send comments and feedbackNearly 1 in 4 people with epilepsy experiences depression, which affects quality of life, seizure control, and adherence to treatment. Depressive symptoms - including suicidality - are one of the strongest predictors of poor quality of life in people with epilepsy, and they can be overlooked or minimized both by people with epilepsy and by clinicians. Sharp Waves spoke with Dr. Rosa Michaelis about the role of neurologists in discussing, screening, diagnosing, and treating depression as a crucial part of patient care. Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: [email protected] International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Send comments and feedbackIs there a fast, simple way to measure whether someone with epilepsy is doing "better" or "worse" compared with a past clinic visit? Not really. Seizure count is often considered a standard, but multiple small seizures may have less impact on someone's life than a single generalized tonic-clonic seizure. In this episode, we talk with authors of a study on an outcome measure that factors the impact of seizures as well as the impact of treatments.The study: Validation of the seizure-related impact assessment scale  Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: [email protected] International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.