Epilepsy Sparks Insights

Epileptologist Eddie Chengo from Kenya discusses the stigma faced by people affected by epilepsy in Africa, explaining that around 75% of people with epilepsy in the region experience stigma and emphasising the importance of addressing this whilst implementing medical treatment. Eddie also shares the various initiatives and research projects his organisation is undertaking to raise awareness and challenge the stigma associated with epilepsy.

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🔗 Eddie's papers 👇

https://www.researchgate.net/scientific-contributions/Eddie-Chengo-44151310 

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🔗 Website & more about Eddie 👇

https://www.torierobinson.com/epilepsy-sparks-insights/eddie-chengo-epilepsy-stigma-kenya 

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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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#epilepsy #neurology #stigma #discrimination

A mutation of a gene can lead to lack of absorption of glucose (our fuel) and cause epilepsy! Carla Marini, a paediatric neurologist and neuropsychiatrist tells us all about the rare epilepsy and metabolic disorder GLUT1 Deficiency Syndrome, emphasising the importance of early diagnosis, treatment using the ketogenic diet (which can help control seizures, improve cognitive function, and decrease the impacts of movement disorders). She also highlights the value of working closely with patient and family groups to understand the clinical manifestations and natural history of the disease. Carla shares an uplifting success story of a patient who has thrived with early intervention.

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Papers mentioned 👇

• “Glucose Transporter 1 Deficiency as a Treatable Cause of Myoclonic Astatic Epilepsy”:

https://jamanetwork.com/journals/jamaneurology/fullarticle/1107863 

• “Early onset absence epilepsy due to mutations in the glucose transporter GLUT1”:

https://www.researchgate.net/publication/26864996_Early_onset_absence_epilepsy_due_to_mutations_in_the_glucose_transporter_GLUT1 

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🔗 Website & more about Carla 👇

https://www.torierobinson.com/epilepsy-sparks-insights/carla-marini-glut1-disorder-metabolism-genetic 

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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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Neuroscientist Nazanin Azarinejad Mohammadi discusses her research on epilepsy genetics, the clinical and functional characterisation of GABAA-receptor related disorders, and how mutations in the GABAA-receptor subunits can lead to epilepsy and morbidities. Nazanin also highlights the variability in symptoms among individuals with the same mutation and the need for further research to understand the factors that contribute to this variability. Plus, emphasised is the importance of genetic testing and personalised treatment for patients with these mutations.

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Paper: “Clinical and functional characterization of GABAA-receptor related disorders: translating genetic diagnostics into personalized treatment” 👇

https://portal.findresearcher.sdu.dk/en/publications/clinical-and-functional-characterization-of-gabaa-receptor-relate 

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🔗 Website & more about Nazanin 👇

https://www.torierobinson.com/epilepsy-sparks-insights/nazanin-azarinejad-mohammadi-genetic-testing-personalised-treatment-GABA-receptors 

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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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As well as preventing up to 100% of seizures in 20% of those with refractory focal epilepsy, Cenobamate may also (indirectly), positively impact mental health, cognitive function and reduce seizure propagation. Ricardo Morcos shares information on the titration of Cenobamate, how it is not suitable during pregnancy, and the importance of a 1:1 clinician-patient relationship. This is part 2 of 2.

Please note that this is not an endorsement of any particular anti-seizure medication (Cenobamate or any of the others mentioned) and any questions or ideas from a patient or carer must be brought up with one’s neurologist/epileptologist.

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Spanish consensus on the management of concomitant anti-seizure medications when using Cenobamate in adults with drug-resistant focal seizures 👇

https://www.researchgate.net/publication/379572148_Spanish_consensus_on_the_management_of_concomitant_antiseizure_medications_when_using_cenobamate_in_adults_with_drug-resistant_focal_seizures 

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🔗 Website & more about Ricardo 👇

https://www.torierobinson.com/epilepsy-sparks-insights/ricardo-mocos-starting-cenobamate-cognition-pregnancy 

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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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As well as preventing up to 100% of seizures in 20% of those with refractory focal epilepsy, Cenobamate may also (indirectly), positively impact mental health, cognitive function and reduce seizure propagation. Ricardo Morcos shares information on the titration of Cenobamate, pregnancy, and the importance of a 1:1 clinician-patient relationship. This is part 2 of 2.

Please note that this is not an endorsement of any particular anti-seizure medication (Cenobamate or any of the others mentioned) and any questions or ideas from a patient or carer must be brought up with one’s neurologist/epileptologist.

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Spanish consensus on the management of concomitant anti-seizure medications when using Cenobamate in adults with drug-resistant focal seizures

https://www.researchgate.net/publication/379572148_Spanish_consensus_on_the_management_of_concomitant_antiseizure_medications_when_using_cenobamate_in_adults_with_drug-resistant_focal_seizures 

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🔗 Website & more about Ricardo 👇

https://www.torierobinson.com/epilepsy-sparks-insights/ricardo-mocos-cenobamate-game-changer-for-epilepsy 

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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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#cenobamate #focalepilepsy #partialseizures #epilepsy #RicardoMocos

For the 11th World Brain Day, hear from co-chair and lead neurologist Tissa Wijeratne, who explains how so many of the brain disorders in nearly 4 billion people can be prevented, and how you can help this happen! Links to the free World Brain Day webinar, and more, are below.

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🎧 Listen to ESI on Spotify!👇

https://open.spotify.com/show/14rwL06qUowezZQGwpR7GW?si=dE4AEAsrQhqbeDc8dKM-dQ

Also on Apple Podcasts or anywhere else you listen!

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World Brain Day 👇

https://wfneurology.org/activities/news-events/wfn-news/2024-05-07-wfn-wbd

World Brain Day webinar 👇

https://us02web.zoom.us/webinar/register/WN_ayYclSOLRSKwriPFg7S5bg#/registration 

World Brain Day content toolkit 👇

https://drive.google.com/drive/folders/1TD_CyerWAa_x65614G6UmWJ8WUBocGNz 

World Health Organization Intersectoral Global Action Plan 👇

https://www.who.int/publications/i/item/9789240096356 

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🔗 Website & more about Tissa 👇

https://www.torierobinson.com/epilepsy-sparks-insights/tissa-wijeratne-world-brain-day-2024 

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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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People forget to bring up memory issues with their neurologist…because of their memory issues! Discover the potentials and limitations of neurosurgery and neuroplasticity with epileptologist Jon Kleen from UCSF medical Center. 

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🔗 Website & more about Jon: 👇

https://www.torierobinson.com/epilepsy-sparks-insights/jon-kleen-epilepsy-surgery-neuroplasticity-memory-cognition

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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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#cognition #memory #epilepsy #jonkleen

Learn all about how people can have memory and other cognitive struggles as part of their epilepsy - in part 1 of 2 with epileptologist Jon Kleen from the UCSF Medical Center, USA! Jon speaks about his career focus, types of cognitive impairments, impacts on quality of life, and more.

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🔗 Website & more about Jon: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/jon-kleen-cognitive-impairments-epilepsy-research

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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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#cognition #memory #epilepsy #jonkleen

Stress and anxiety levels are incredibly high amongst the population of those with an epilepsy and are commonly seizure triggers. Neil Shah of the Stress Management Society speaks of stress in today's society, the importance of recognising and addressing it, removing the guilt, shame, and stigma associated with it, and the power we have to limit it.

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🔗 Website & more about Neil: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/neil-shah-managing-stress-anxiety-with-epilepsy

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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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#epilepsy #stress #anxiety #sleep #neilshah

Learn of when an Autoimmune-Associated Epilepsy can onset, potential causes, and the needs of people affected - other than seizure control! All in part 2 of 2 with epileptologist Claude Steriade from​⁠ NYU Langone Health  Epilepsy Center.

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🔗 Website & more about Claude: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/claude-steriade-other-symptoms-of-autoimmune-associated-epilepsy

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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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#autoimmune #autoimmuneepilepsy #neurology #immunology