Sharp Waves: ILAE's epilepsy podcast
Epilepsy affects more than 50 million people. Every day. Sharp Waves brings you stories about people with epilepsy, physicians treating epilepsy, and researchers studying the condition. We'll cover the latest research, challenges to diagnosis and treatment, and issues from around the world.
Episodes
Celebrating 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 dif...
A 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 epi...
About 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 epil...
While 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 model of ...
The 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: podcast@ilae.org.
The International League Against Epilepsy is the world's preeminent association of hea...
About 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:
Nearly 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 rol...
Is 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 fa...
Closing the epilepsy treatment gap relies heavily on social and cultural acceptance of epilepsy as a brain disorder that can be managed with medication or other therapies. Dr. Rugare Mugumbate discusses the five disadvantages faced by people with epilepsy, as well as the important role of social workers and the need to focus on lessons learned from previous pilot projects and awareness campaigns.
Dr. Mugumb...
Somatic genetic epilepsies arise from mutations that occur early in fetal development. They are usually only detectable by genetic sequencing of tissue. For these epilepsies, the timing of the mutation is key: For example, research has shown that focal cortical dysplasia type IIB and hemimegaloencephaly are genetically the same disease, but arise from somatic mutations at different developmental time point...
In a retrospective study of 31 patients with highly refractory epilepsy, 29% had more than a 50% reduction in seizures for at least 12 months after being treated with immunotherapy. Three of these patients became seizure free. Other than a trend toward a diagnosis of focal epilepsy, researchers did not identify any specific features predictive of treatment response. Sharp Waves spoke with the first author ...
What are variants of uncertain significance (VUS) in epilepsy genetic testing? How are they defined, and can those definitions change over time? Sharp Waves talks with Dr. Gemma Carvill as part of our genetic testing series.
RESOURCES
Standards for interpreting variants (American College of Medical Genetics)
EpiPred website for STXBP1 (dev...
This episode covers a wide scope of issues, including treatment options, treatment response, prognosis and the role of seizures versus the underlying etiology, most common etiologies for different age groups, new-onset refractory status (NORSE), and the prevalence and special considerations of non-convulsive status epilepticus.
Sharp Waves episodes are meant for informational purposes only, and not as clin...
In use since the 1970s, valproate is highly effective for genetic generalized epilepsies and some forms of pediatric epilepsy. The medication also is associated with a 10% risk of birth defects in children exposed to it in utero, as well as a 30% to 40% risk of neurodevelopmental issues, including autism. Sharp Waves spoke with Dr. Tony Marson about the reproductive risks for women and men taking valproate...
ILAE's updated seizure classification position paper was published in Epilepsia in April 2025. Sharp Waves talked with Dr. Sandor Beniczky about the updates and how they will impact research and clinical care.
The position paper is open access and available online.
Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.
Let us know how we're ...
Seizures cost Stacia Kalinoski her career in broadcast journalism and forced her to give up running. In her new memoir, Kalinoski recounts her journey from first seizure in college to epilepsy surgery years later, describing her seizures, struggles with medication, and challenges coming to terms with her epilepsy.
Kalinoski's book, Racing Uphill, is available July 1, 2025 and can be ordered or pre-orde...
Work-related stress and burnout are common in physicians, with rates of burnout estimated between 25% and 60%. These stresses impact physician health, patient care, and health care systems as a whole. Sharp Waves spoke with Dr. Sheryl Haut about strategies to identify work stress and mitigate burnout.
Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.
Microglia can have protective and also potentially harmful effects in the brain. They seem to be involved in dampening the nervous system during acute seizures – but also appear to play a role in neuronal loss and cortical thinning. Dr. Cecilie Nome spoke with Dr. Amy Brewster about the many faces of microglia and the current understanding of their role in epilepsy and seizures.
Many of the most common concerns of people with epilepsy are topics they don't usually talk about with physicians. This is one of many findings of a study using AI to analyze more than 55,000 posts about epilepsy on Reddit. Sharp Waves spoke with the study's first author and two epilepsy advocates about the results and how they could help initiate important patient-provider conversations.
PLEASE ...
Music can affect emotions, spark memories, and influence mood. In cases of musicogenic epilepsy, music can trigger seizures. In other cases, music may reduce seizure frequency. Dr. Cecilie Nome talks with Dr. Phillip Pearl and Prof. Nigel Osborne about the power of music and its effects on the brain.
Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.
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