Let’s talk about epilepsy

Growing up and becoming more independent is a big step for any young person. But when you live with epilepsy, that journey can come with extra worries, decisions and conversations, both for young people and their parents.

In this episode, Alex from Young Epilepsy's Youth Support Service is joined by 17-year-old Sophie and her mum, Emma, for an honest conversation about growing up with epilepsy, learning to manage risk and finding the confidence to let go.

Sophie was diagnosed with epilepsy when she was six. Now, as she prepares for university, she and Emma reflect on how their relationship has changed as Sophie has taken more responsibility for her epilepsy and her own life.

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.

If you’re feeling sad, worried or lonely, text ‘PURPLE’ to 85258 to start a conversation with Shout. More information: https://www.youngepilepsy.org.uk/shout

Resources and support

If you or someone you know is affected by epilepsy, Young Epilepsy is here to help:

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This episode focuses on the ketogenic diet as a treatment for epilepsy, particularly drug-resistant epilepsy. We explore what medical ketogenic diet therapy is, how it works and what starting and following the diet can look like.

We also hear from a parent about her family’s experience and the difference the diet made to their lives.

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.

Medical ketogenic diet therapy should be managed and monitored by an experienced healthcare team. Always consult with a qualified healthcare provider for personalised medical advice and support tailored to your specific needs.

A special thank you to the sponsor of this episode, Vitaflo. Vitaflo International specialises in medical nutrition, including products to support ketogenic diet therapy. Sponsor support does not influence the podcast topics, guests or questions, which are led by Young Epilepsy and our community. Find out more: https://www.myketogenicdiet.com/information/about-us

Useful links:

• Young Epilepsy website: https://www.youngepilepsy.org.uk/about-epilepsy/treatments/ketogenic-diets

• Matthew’s Friends – information and support around medical ketogenic dietary therapies: https://www.matthewsfriends.org/

• The Daisy Garland – support and resources for children with drug-resistant epilepsy and their families: https://www.thedaisygarland.org.uk/

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How does epilepsy affect memory, and what can help when you're constantly forgetting things?

In this episode, host Scarlett is joined by former Youth Voice Network member Annie and a young person living with epilepsy to talk honestly about memory challenges, brain fog and the impact epilepsy and medication can have on everyday life.

Together, they share personal experiences of struggling with short-term and long-term memory, forgetting important tasks, managing medication routines and coping with memory difficulties at school, work and in relationships.

They also discuss practical strategies that help them stay organised, from phone reminders and calendars to creating routines and asking for support when they need it. This honest and relatable conversation highlights an often-overlooked part of living with epilepsy and reminds listeners that they're not alone if memory doesn't always work the way they'd like it to.

NOTICE: Epilepsy is a highly individualised condition. 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.

Always consult a qualified healthcare provider for personalised support.

If you’re feeling sad, worried or lonely, text ‘PURPLE’ to 85258 to start a conversation with Shout. More information: https://www.youngepilepsy.org.uk/shout 

Resources and support

If you or someone you know is affected by epilepsy, Young Epilepsy is here to help:

📲 Follow Young Epilepsy:

In this episode of the Young Epilepsy Podcast, we explore the transition from children’s to adult services for young people with harder-to-manage epilepsy.

Host Joe Paternoster, Assistant Psychologist at Young Epilepsy, is joined by Neil Williamson, Safeguarding Trustee at Dravet Syndrome UK and former children’s epilepsy nurse; Nicky Heenan, Children’s Neurology Nurse and joint lead on the transition section of the NHS England Epilepsy Bundle of Care; and Denise Murphy, whose daughter Lucy has Dravet syndrome.

Together, they discuss what a good transition should look like, why families can encounter gaps between children’s and adult care, and how early planning, clear information and the right professional support can make a difference. Denise also shares her family’s experience of navigating specialist healthcare, funding and supported independent living.

Whether you’re a young person preparing to move into adult services, a parent or carer supporting someone with complex needs, or a professional involved in transition planning, this episode offers practical information and lived experience to help you prepare.

NOTICE: Epilepsy is a highly individualised condition. 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. Always consult a qualified healthcare provider for personalised support.

If you’re feeling sad, worried or lonely, text ‘PURPLE’ to 85258 to start a conversation with Shout. More information: Shout | Support Service for Young Epilepsy

🔗 Support and signposting

If you’re preparing to move from children’s to adult services, these resources offer further information and support:

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What really frustrates young people about living with epilepsy?

In this honest and unfiltered episode of Let's Talk About Epilepsy, host Cam is joined by members of Young Epilepsy's Youth Voice Network: Hattie, Sophie and Spike. Together, they create a safe space to vent about the realities of living with epilepsy and the challenges that often go unseen.

From lack of understanding in schools and workplaces to navigating friendships, dating, independence and public transport, the conversation shines a light on the barriers, misconceptions and frustrations that many young people with epilepsy face every day.

Our guests share personal experiences of being excluded from activities, struggling to access the right support, managing medications, dealing with stigma, and fighting for their voices to be heard. They also discuss the importance of good support networks, self-advocacy and connecting with others who understand what life with epilepsy is really like.

While some of the topics discussed are challenging, this episode is full of humour, resilience and encouragement for other young people living with epilepsy.

⚠️ Trigger warning: This episode contains discussion of seizures, discrimination, mental wellbeing challenges, medication side effects and SUDEP (Sudden Unexpected Death in Epilepsy).

NOTICE: Epilepsy is a highly individualised condition. 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. Always consult a qualified healthcare provider for personalised support.

If you’re feeling sad, worried, or lonely, text ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout

🔗 Support and signposting

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In this episode of the Young Epilepsy Podcast, we explore Vagus Nerve Stimulation (VNS) therapy and how it can help children and young people with harder to manage epilepsy.

Host Kirsten McHale, Head of Healthcare at Young Epilepsy, is joined by Dr Das, Paediatric Consultant Neurologist at Great Ormond Street Hospital, and Hattie, a member of the Youth Voice Network who has been living with a VNS device for several years. Together, they explain how VNS works, who it might be suitable for, and what life is really like with the device. Whether you're considering VNS therapy yourself, supporting a young person with epilepsy, or simply want to understand more about treatment options, this episode provides expert information alongside real-life experience.

NOTICE: Epilepsy is a highly individualised condition. 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. Always consult a qualified healthcare provider for personalised support.

If you’re feeling sad, worried, or lonely, text ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout

🔗 Support and signposting

If you'd like to learn more about VNS therapy or other treatment options for epilepsy:

Follow Young Epilepsy:

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 episode discusses SUDEP (Sudden Unexpected Death in Epilepsy) and includes references to bereavement and loss, which may be distressing for some listeners. For more information: https://www.youngepilepsy.org.uk/about-epilepsy/sudden-unexpected-death-in-epilepsy-sudep

If you’re feeling sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: Shout support service: https://www.youngepilepsy.org.uk/shout/ In this special live episode, actress and Young

Epilepsy supporter Ellie Henry and broadcaster Jennie Gow host a series of powerful conversations bringing together women, young people and families to share their experiences of epilepsy.

We hear deeply personal stories from Young Epilepsy ambassador Sam Bailey and autism and epilepsy advocate Holly Steer, who open up about the reality of supporting children with epilepsy, from diagnosis to navigating complex needs and daily life.

The conversation continues with young people sharing their own journeys. Youth Voice Network member Elina reflects on growing up with epilepsy and the pressures of feeling different, while Olivia speaks about independence, education and managing epilepsy through key life milestones.

In a powerful mothers’ panel, Nicole Ronson Allalouf, Clare Scheckter and Emma O’Brien share honest and emotional accounts of caring for children with complex epilepsy, highlighting the challenges families face across healthcare, education and wider support systems.

Throughout the episode, we explore the emotional realities of epilepsy, the importance of being heard, and the strength that comes from shared experience and community. Hear Her Voice centres the voices of women and girls living with epilepsy and shows just how impactful it can be when those voices are heard.  ________________________________________

Useful Links:

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Contact: [email protected]

In this episode, host Dr Lara Carr is joined by Professor Helen Cross and Tanisha from the Youth Voice Network to talk about epilepsy brain surgery. They explain when surgery might be considered, what the process involves, and how it can change a young person’s life, alongside real reassurance and support for families.

NOTICE:

Epilepsy is a highly individualised condition. 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.

Always consult a qualified healthcare provider for personalised support.

If you’re feeling sad, worried, or lonely, text ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout

🔗 Useful links

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In this episode, Ree is joined by Milla, a young person with epilepsy, and her brother Harry to talk honestly about sibling experiences. They share what it’s like growing up with epilepsy in the family, the emotional impact on siblings, and why support and understanding matter for everyone.

NOTICE: Epilepsy is a highly individualised condition. 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.

Always consult a qualified healthcare provider for personalised support.

If you’re feeling sad, worried, or lonely, text ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout

🔗 Useful links:

Follow Young Epilepsy:

In this episode, we introduce Harder to Manage Epilepsy, a new podcast series from Young Epilepsy exploring the challenges faced by children, young people and families living with epilepsies that don’t respond to medication.

Around 1 in 3 young people with epilepsy continue to have seizures despite treatment. These epilepsies are often described as harder to manage or drug‑resistant and can come with additional challenges, including difficulties with learning, development, behaviour and everyday family life.

This series is about shining a light on those experiences, challenging misconceptions, and sharing clear, trustworthy information and support.

NOTICE: Epilepsy is a highly individualised condition. 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.

Always consult a qualified healthcare provider for personalised support. If you’re feeling sad, worried, or lonely, text ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout

🗣️ Meet our guests:

💜 Why this series matters

If you’re living with harder to manage epilepsy – or supporting someone who is – it can feel isolating and overwhelming. This series aims to help you:

📍 Support and further information If you or someone you care for is affected by harder to manage epilepsy, help is available:

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