Sometimes people with an epilepsy take their own lives - and this is more common that many realise. Psychiatrist & researcher Prof. Andrea Cipriani joins Torie to talk of the psychiatric symptoms of the epilepsies, including depression, anxiety, psychosis, and even suicide; expressing the need for joined-up care between neurology and psychiatry, and why lived experience must shape treatment, management, and where possible; prevention. It’s a powerful call for holistic, person-centred support!

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🔗 Website & more about Andrea: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/andrea-cipriani-suicide-lived-experience-biopsychosocial-model-care

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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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Genetic epilepsies are way more complex than we thought!! Clinical neurologist and physician-scientist Prof. Sam Berkovic chats with Torie all about the differences between inherited, de novo, and somatic forms, challenges in diagnoses, impacts on families, and societal stigma. However, Sam also shares the exciting, positive advancements in genetic research, how understandings have far, far improved over the past few years, and how cool, effective international collaboration in research has led to and shall lead to further advancements in precision medicine!

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🔗 Website & more about Sam: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/sam-berkovic-genetic-epilepsy-developments

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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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Torie chats with neurologist Sanja Gluscevic about SUDEP (Sudden Unexpected Death in Epilepsy) - a critical, often avoided topic! Sanja provides statistics and how to minimise risk factors. Sanja emphasises the need for effective communication between clinician and patient and/or caregiver, plus highlights holistic approaches to minimising SUDEP risk, including managing mood and sleep, and the importance of adherence to medication!

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🔗 Website & more about Sanja: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/sanja-gluscevic-minimising-sudep-risk

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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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Neuropsychologist Prof. Gus Baker discusses clinical neuropsychology in relation to epilepsy! He highlights the significant morbidities associated with epilepsy, such as depression and anxiety, and really emphasises the importance of understanding the mental health aspects of epilepsy. Gus and Torie also chat about the role of clinicians in addressing these comorbidities and the need for PWE education and empowerment to improve quality of life!

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🔗 Website & more about Gus: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/gus-baker-neuropsychology-anxiety-depression-psychosis

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Epileptologist Prof. Graeme Jackson talks about the cool Australian Epilepsy Project - including the integration of advanced technology, including MRI and AI to improve patient outcomes and quality of life! The project aims to transform the traditional approach to epilepsy treatment by utilising telehealth and data analysis to provide personalised care. Graeme emphasises the importance of addressing mental health alongside seizure control and expresses aspirations for the project's global impact!

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🔗 Website & more about Graeme 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/graeme-jackson-australian-epilepsy-project-mri

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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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Paediatric neurologist Matthias De Wachter chats about the benefits of a holistic approach to helping people affected by the epilepsies, emphasising the importance of understanding the broader implications of the disease - with symptoms other than seizures. Matthias shares with us his research into KCNQ2 & 3, his insights into the significance of lifestyle factors in managing epilepsy, the transition from paediatric to adult care, ongoing research for precision medicine, and drug repurposing for rare genetic epilepsies!

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🔗 Website & more about Matthias 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/matthias-de-wachter-morbidities-kcnq2-kcnq3-dravet

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https://www.epilepsysparks.com/glossary

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Dr. Bindu Menon discusses her work as a neurologist in India; focusing on epilepsy and stroke awareness. She highlights the significant prevalence of these conditions in India, particularly in rural areas, and the challenges faced in treatment and education. Bindu emphasises the importance of empowering women and the role of technology, such as the Epilepsy Help App, in improving patient care and adherence to medication.

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🔗 Website & more about Bindu 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/bindu-menon-epilepsy-empowerment-india

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https://www.epilepsysparks.com/glossary

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Dr. Simona Giorgi from Dravet Syndrome Foundation Spain shares their preclinical and clinical studies, epidemiological research, and their development of tools to support caregivers and people affected by Dravet! Highlighted are the needs for greater awareness among healthcare professionals about the capabilities of patient advocacy groups and the invaluable psychological support they can provide to families.

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🔗 European Dravet Syndrome Conference 2025

https://www.epilepsysparks.com/conferences/european-dravet-syndrome-conference-madrid

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🔗 Website & more about Simona: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/simona-giorgi-dance-dravet-epidemiology-support

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Chapters 📖

00:00 Intro

00:00 Meet Simona & Dravet Syndrome Foundation Spain

02:48 Research Initiatives and Collaborations

06:07 Understanding Epidemiological Studies

08:58 Tools for Caregivers and Patients

11:57 Awareness and Support for Families

15:04 Future Directions

00:00 Conclusion & Thanks

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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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#rareepilepsy #Dravet #epidemiology #neuropsychiatric #carer #caregiver