Let’s talk about epilepsy

We dive into the emotional journey of getting an epilepsy diagnosis. Host Kirsten McHale chats with Professor Mark Richardson, Dr Colin Dunkley, and Spencer from the Youth Voice Network. They talk about the diagnosis process, the challenges families face, and the cool new tech that's changing epilepsy care. This episode is packed with expert advice and real-life stories to help and empower young people with epilepsy and their families. IMPORTANT: It is important to understand that epilepsy is a highly individualised condition, and each person’s experience with epilepsy can vary significantly. The information, experience and views shared on this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment. Always consult with a qualified healthcare provider for personalised medical advice and support tailored to your specific needs. If you’re sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout Useful links: https://www.youngepilepsy.org.uk/about-epilepsy/diagnosis/ https://www.youngepilepsy.org.uk/youth-voice-network https://www.youngepilepsy.org.uk/get-involved/give-time/help-our-research https://www.youngepilepsy.org.uk/about-epilepsy https://www.youngepilepsy.org.uk/what-we-do/support-inclusion/youth-support Follow us: X: https://x.com/youngepilepsy Facebook: http://facebook.com/YoungEpilepsy Instagram: https://www.instagram.com/youngepilepsy/ YouTube: https://www.youtube.com/user/youngepilepsy LinkedIn: https://www.linkedin.com/company/young-epilepsy/ TikTok: https://www.tiktok.com/@youngepilepsy Contact: communications@youngepilepsy.org.uk

In our first LIVE episode, renowned broadcaster, Edith Bowman hosts a powerful panel discussion with Netflix and Hollyoaks actor Ellie Henry, Fashion PR Hum Fleming, and student Mariam Hussain who share their personal stories of diagnosis, school, work, memory loss, and the importance of support networks. We also explore the impact of epilepsy on mothers as BBC F1 host Jenny Gow, Dr Laura Cunnane and Kelly Norford open up about the challenges and resilience of families navigating epilepsy with their child. Dr. Tejal Mitchell, consultant neurologist, joins to answer questions and discuss the unique challenges facing women and girls, including hormonal changes, medication, and the transition from paediatric to adult care. Hear Her Voice centres the voices of women and girls living with epilepsy and is an example of how powerful a conversation can be. PLEASE NOTE: Epilepsy is a highly individualised condition, and each person’s experience can vary significantly. The information, experiences, and views shared in this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider for personalised medical advice and support tailored to your specific needs. ⚠️ Please proceed with care: This film discusses SUDEP (Sudden Unexpected Death in Epilepsy) and may be triggering for some viewers. For more information search 'SUDEP' on our website. If you’re sad, worried, or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout Chapters: 0:00 Introduction and Overview 2:00 Living with Epilepsy: Ellie’s Story 7:30 School, Exams, and Advocacy: Maryam’s Experience 15:00 Memory, Support, and Openness: Hum’s Journey 29:00 Mothers’ Panel: Family Life and Resilience 50:00 Coping with Loss and Finding Community: Laura’s Story 61:00 Expert Q&A with Dr. Tejal Mitchell 79:00 Audience Questions and Reflections 89:30 Closing Thoughts and Support Useful Links: Young Epilepsy website: https://www.youngepilepsy.org.uk/ Information about epilepsy: https://www.youngepilepsy.org.uk/about-epilepsy Seizure first aid poster: https://www.youngepilepsy.org.uk/sites/default/files/2025-02/SeizureFirstAidPosterPrinterFriendly.pdf Youth Voice Network: https://www.youngepilepsy.org.uk/youth-voice-network/ Young Epilepsy Youth Support Services: https://www.youngepilepsy.org.uk/what-we-do/voice-support/support-inclusion Social Media: X: https://x.com/youngepilepsy/ Facebook: http://facebook.com/YoungEpilepsy Instagram: https://www.instagram.com/youngepilepsy/ YouTube: https://www.youtube.com/user/youngepilepsy LinkedIn: https://www.linkedin.com/company/young-epilepsy/ TikTok: https://www.tiktok.com/@youngepilepsy/ Contact: communications@youngepilepsy.org.uk

We talk about what it’s really like to be a young person with epilepsy. We look at why some people feel alone, how to find support, and how building a community can help. We also talk about bullying, mental health, and how to get help when you need it. In this episode: Feeling Alone: Why so many young people with epilepsy feel isolated, and what can help. Building Community: How making friends and joining groups can make life better. Online Support: How you can get help and join in, wherever you live. Real Stories: Young people share how meeting others changed their lives. Bullying and Ignorance: Why it happens, and what we can do about it. Mental Health: Why it matters, and where to find support. Hope: You’re not alone—there’s always someone who understands. NOTICE: Epilepsy is different for everyone. What works for one person might not work for another. The stories and advice in this podcast are not medical advice. Always talk to a doctor or nurse for help that’s right for you. If you’re feeling sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout Useful Links: Young Epilepsy: https://www.youngepilepsy.org.uk/ Youth Support Services: https://www.youngepilepsy.org.uk/what-we-do/support-inclusion/youth-support Info about epilepsy: https://www.youngepilepsy.org.uk/about-epilepsy Social Media: X: https://x.com/youngepilepsy/ Facebook: http://facebook.com/YoungEpilepsy Instagram: https://www.instagram.com/youngepilepsy/ YouTube: https://www.youtube.com/user/youngepilepsy LinkedIn: https://www.linkedin.com/company/young-epilepsy/ TikTok: https://www.tiktok.com/@youngepilepsy/ Contact: communications@youngepilepsy.org.uk

We hear what it’s really like to be part of the Youth Voice Network at Young Epilepsy. Jasmine chats with Milla, who shares their personal story and how being involved has helped them feel more confident and connected. We also explain what the Youth Voice Network is, how it works, and how young people can get involved to make sure their voices are heard and their experiences shape the future of epilepsy support. PLEASE NOTE: It is important to understand that epilepsy is a highly individualised condition, and each person’s experience with epilepsy can vary significantly. The information, experience and views shared on this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment. Always consult with a qualified healthcare provider for personalised medical advice and support tailored to your specific needs. If you’re sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout Useful links: Young Epilepsy | Homepage Youth Voice Network | Young Epilepsy Youth Support | Young Epilepsy Information About Epilepsy | Young Epilepsy Follow us on Socials: X: https://x.com/youngepilepsy/ Facebook: http://facebook.com/YoungEpilepsy Instagram: https://www.instagram.com/youngepilepsy/ YouTube: https://www.youtube.com/user/youngepilepsy LinkedIn: https://www.linkedin.com/company/young-epilepsy/ TikTok: https://www.tiktok.com/@youngepilepsy/ Contact: communications@youngepilepsy.org.uk

This episode focuses on how epilepsy can affect mental health and wellbeing. We explain why this happens and how young people, parents, and carers can get support. There are also tips for healthcare professionals on how to include mental health care in epilepsy treatment. NOTICE: It is important to understand that epilepsy is a highly individualised condition, and each person’s experience with epilepsy can vary significantly. The information, experience and views shared on this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment. Always consult with a qualified healthcare provider for personalised medical advice and support tailored to your specific needs. If you’re sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout A special thank you to the sponsors of this episode, Nutricia Ketogenics. Find out more: https://www.nutricia.com/ Useful links: Young Epilepsy | Homepage Youth Support | Young Epilepsy Mental Health Support Network provided by Chasing the Stigma | Hub of hope For professionals: NHS England » National bundle of care for children and young people with epilepsy OPEN UK (Organisation of Paediatric Epilepsy Networks in the UK) | RCPCH NHS England » Regional teams Epilepsy12 audit | RCPCH Follow us on Socials: X: https://x.com/youngepilepsy/ Facebook: http://facebook.com/YoungEpilepsy Instagram: https://www.instagram.com/youngepilepsy/ YouTube: https://www.youtube.com/user/youngepilepsy LinkedIn: https://www.linkedin.com/company/young-epilepsy/ TikTok: https://www.tiktok.com/@youngepilepsy/ Contact : communications@youngepilepsy.org.uk