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

Sharp Waves: ILAE's epilepsy podcast

Sharp Waves: ILAE's epilepsy podcast
"Living with epilepsy should not be a secret": Jessie Nyirenda - encore episode (2022)
Feb 09, 2026
ILAE

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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 different from anyone else. Now a mother of three and a banking sector specialist, Jessie is active in epilepsy advocacy.

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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 health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Episode Artwork "Living with epilepsy should not be a secret": Jessie Nyirenda - encore episode (2022) 13:46 Episode Artwork EpiCARE: The European Reference Network for Rare and Complex Epilepsies 30:51 Episode Artwork Intellectual disability and epilepsy: A patient-centered perspective 23:36 Episode Artwork Acute symptomatic seizures: Dr. Marian Galovic 27:33 Episode Artwork Dravet Syndrome: Dr. Ingrid Scheffer 27:29 Episode Artwork Drug-resistant epilepsy: Dr. Patrick Kwan 32:36 Episode Artwork Normalizing depression in epilepsy: Screening, diagnosis, treatment - Dr. Rosa Michaelis 22:27 Episode Artwork A novel patient-reported outcome measure for epilepsy: The impacts of seizures and treatment 18:48 Episode Artwork Social work in epilepsy: Closing the treatment gap and improving quality of life - Dr. Rugare Mugumbate 30:50 Episode Artwork Somatic genetic epilepsies: Dr. Christian Bosselmann 31:31 Episode Artwork Research recap: Empiric immunotherapy for highly refractory epilepsy: Dr. Elisabeth Doran 12:54 Episode Artwork Genetic testing: Variants of uncertain significance (VUS) - Dr. Gemma Carvill 34:22 Episode Artwork What's new in status epilepticus: Dr. Eugen Trinka 46:04 Episode Artwork Valproate and reproductive risks in women and men with epilepsy: Dr. Tony Marson 22:28 Episode Artwork ILAE Updated seizure classification: Dr. Sandor Beniczky 13:01 Episode Artwork Documentary filmmaker confronts epilepsy in a new memoir: Stacia Kalinoski 15:03 Episode Artwork Work-life balance: Dr. Sheryl Haut 22:21 Episode Artwork The role of microglia in epilepsy: Hero, villain, or both? Dr. Amy Brewster 19:03 Episode Artwork Language models reveal concerns of people with epilepsy in online discussions 31:59 Episode Artwork Music, epilepsy, and the brain: Dr. Phillip Pearl & Prof. Nigel Osborne 26:36 Episode Artwork Genetic testing for epilepsy in low-resource regions 24:59 Episode Artwork Emergency diagnosis and treatment of status epilepticus 29:15 Episode Artwork Folic acid supplementation in women with epilepsy 21:50 Episode Artwork High-frequency oscillations and epilepsy: Clinical and basic science perspectives 25:24 Episode Artwork Finding epilepsy genes: Dr. Allan Bayat 14:58