Can we improve epilepsy outcomes by bringing care closer to home? A cluster randomized trial compared home care with community health workers to standard clinic care.

ILAE spoke with Dr. Gagandeep Singh and Dr. Meenakshi Sharma, authors of the study publication, which was published in Epilepsia Open.

Twenty-four clusters, each comprising 10 people with epilepsy, were randomized to either home-based or clinic care. Home-care recipients had better medication adherence and fewer seizures, compared with clinic-care recipients. Significantly more people from clinic care (37%) than home care (19%) exited the trial (P = 0.003).

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].

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.

How has the crisis in Ukraine affected people with epilepsy and their families, as well as the physicians who care for them? Dr. Alina Ivaniuk speaks with Dr. Olha Tychkivska about the volunteer efforts to provide anti-seizure medication to people in Ukraine, as well as Ukrainians who fled to other countries.

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].

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.

Jessie Nyirenda's seizures began in her early teens. She was dismissed as attention-seeking and told she might be cursed. Years later, Jessie discovered information about her condition through library research and was formally diagnosed. She now works as a financial educator and is a mother of three children.

Jessie was part of an advisory board to the International Bureau for Epilepsy, which helped develop an advocate's toolkit on counteracting epilepsy stigma in Africa. The toolkit is the first of several that will be developed in different regions of the world.

Dr. Bruna Nucera interviewed Jessie about her experience with epilepsy, her advice to others with epilepsy, and how she has dealt with discrimination.

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].

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.

Stigmatizing people with epilepsy is a form of discrimination, and it can affect all aspects of someone's life: school, family life, work, friendships, relationships, and marriage.

The International Bureau for Epilepsy (IBE), ILAE's partner organization, consulted people with epilepsy and their families to produce a toolkit for addressing epilepsy stigma in Africa. The materials provide concrete, practical ways that advocates can work to reduce stigma in African countries.

IBE plans to produce similar toolkits customized to other regions of the world.

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].

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.

Bidirectional links between epilepsy and sleep have been known for thousands of years. Despite nearly a century of research using EEG investigations, the relationships are still not well understood.

Dr. Laurent Sheybani interviewed Dr. Birgit Frauscher, an epileptologist and sleep specialist at the Montreal Neurological Institute. They discussed what is known about sleep patterns, how sleep may influence epileptic activity and vice versa, and how sleep research may lead to more effective epilepsy treatments.

Studies mentioned in the interview include:
Interictal Hippocampal Spiking Influences the Occurrence of Hippocampal Sleep Spindles (Frauscher et al., 2015, Sleep)

Focal epilepsy disrupts spindle structure and function (Schiller et al., 2022, Nature Scientific Reports)

Origin and significance of the cyclic alternating pattern: Review article (Terzano & Parrino, 2000, Sleep Medicine Reviews)

SleepSEEG: automatic sleep scoring using intracranial EEG recordings only (von Ellenrieder et al., 2022, J. Neural Eng.)

Recurrent Hippocampo-neocortical sleep-state divergence in humans (Guthrie et al., 2022, PNAS)

Scalp spindles are associated with widespread intracranial activity with unexpectedly low synchrony (Frauscher et al., 2015, Neuroimage)

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].

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.

Dr. Andres Kanner is one of the best known researchers in the behavioral aspects of epilepsy, and has authored more than 300 papers and book chapters. 

Dr. Kanner sat down with ILAE to talk about his original goal of becoming an artist, his path to epileptology, and how he has worked to become what patients call "an amazing, compassionate doctor".

He is director of the University of Miami School of Medicine's Comprehensive Epilepsy Center of Excellence, chief of the Epilepsy Division, and professor of clinical neurology. 

Dr. Kanner is quadruple-boarded in neurology, psychiatry, clinical neurophysiology and epilepsy. He has long-standing research interests in the areas of pharmacology of epilepsy, psychiatric aspects of epilepsy and surgical treatment of treatment-resistant focal epilepsy. 

He has served on the editorial boards of several journals and held leadership positions in many organizations, including the International League Against Epilepsy, American Epilepsy Society, and American Academy of 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].

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.

Improving lesion detection in people with drug-resistant epilepsy is crucial for optimal surgical outcomes. The MELD Project is an open-science consortium using deep learning principles to develop automated lesion detection of clinical MRI data. Dr. Maryam Nabavi Nouri spoke with Dr. Konrad Wagstyl about the project, publications, progress, and goals.

Currently, the MELD project has three ongoing themes:

• Automated detection of lesions in patients with drug-resistant epilepsy
• Understanding the topographical distribution of focal cortical dysplasias (FCDs)
• Morphological characterisation of FCD lesions

Twitter: @meld_project

Website: MELD Project

Publications:

Atlas of lesion locations and postsurgical seizure freedom in focal cortical dysplasia: A MELD study (2021, Epilepsia)

Interpretable surface-based detection of focal cortical dysplasias: a Multi-centre Epilepsy Lesion Detection study (2022, Brain)

Networks Underlie Temporal Onset of Dysplasia-Related Epilepsy: A MELD Study (2022, Annals of 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].

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.

Dr. Alina Ivaniuk talks with Dr. Caroline Neuray about her career path from medical school to industry CEO. (It's not as direct as it sounds!) They discuss the power of peer mentoring, ways to improve medical education, finding the courage to accept change, and what's up with those comments from reviewer #2, anyway.

Dr. Neuray is Chief Executive Officer of Epilog, which offers advanced EEG analysis to support clinical care, clinical trials, and research. She received her MD from the University of Munich and completed neurology training at Paracelsus Medical University in Salzburg, with a clinical fellowship in epilepsy at University College London. Dr. Neuray also completed an MBA short course at the London School of Economics. She is a founding member of ILAE's Young Epilepsy Section (YES) and a former YES regional representative (Europe). She serves on several ILAE committees.

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].

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.

First-line immunotherapy and the ketogenic diet are two main recommendations for treatment of NORSE/FIRES of unknown cause, according to results from an international consensus group published in Epilepsia.

Dr. Maryam Nabavi Nouri interviews first author Dr. Ronny Wickstrom.

For cases with unknown etiology,  first-line immunotherapy should be considered within 72 hours of seizure onset, and second-line immunotherapy and the ketogenic diet should be considered within 7 days of seizure onset.

The recommendations and clinical tools are available now:

International consensus recommendations for management of new-onset refractory status epilepticus (NORSE) including febrile infection-related epilepsy syndrome (FIRES): Summary and clinical tools

International consensus recommendations for management of new-onset refractory status epilepticus (NORSE) including febrile infection-related epilepsy syndrome (FIRES): Statements and supporting evidence

This episode was reported by Dr. Maryam Nabavi Nouri and edited and produced by Nancy Volkers.

Sharp Waves content is meant for informational purposes only and not as medical or clinical advice.

Families affected by NORSE can join the NORSE Family Registry and contribute information that may help shape and initiate research.  NORSE Family Registry registration information is available in multiple languages:
English | Francais| Mandarin | Espanol

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].

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.

Nurses have been called the "glue" of epilepsy care, but their value and impact aren't always appreciated. The ILAE Nursing Section welcomes nurses from every country to help advocate for a better understanding of what nurses do, how their care improves outcomes in people with epilepsy, and how nurses can contribute to the goals of the Intersectoral Global Action Plan for Epilepsy and other Neurological Diseases (IGAP).

Support from epilepsy clinicians and researchers is vital. Epigraph spoke with Nursing Section leaders Karen Legg, Patty Osborne Shafer, and Jane von Gaudecker about the roles and responsibilities of epilepsy nurses, and how clinicians can support them.

Join the ILAE Nursing Section
Learn more about the ILAE Nursing Section

Research links:

Nurse-led care for epilepsy at the primary level in a rural health district in Cameroon (2008 - Kengne AP et al., Epilepsia)

Patients with epilepsy care experiences: Comparison between services with and without an epilepsy specialist nurse (2018 - Higgins A et al., Epilepsy & Behavior)

Epilepsy Specialist Nurses: The Evidence (the ESPENTE study) (2019 - Campbell F et al.)

Benefits of the epilepsy specialty nurse role, standardized practices and education around the world (2019 - Prevos-Morgant M et al, Revue Neurologique)

 A 2022 report by Epilepsy Consortium Scotland that highlights the importance of epilepsy nurse services during the pandemic


This episode was reported, edited, and produced by Nancy Volkers.

Contact us with feedback or episode ideas at [email protected].

Sharp Waves content is meant for informational purposes only and not as medical or clinical advice.

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].

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.