A young person’s experience of living with epilepsy

RCPCH Podcasts

In this first of a podcast series from the Medicines for Children team, we speak with Fiona, a young person with epilepsy, and her mum, Karen. It's an honest and lively discussion from their fear at first diagnosis to working out the right medication, to learning to live well with the condition.

The Medicines for Children team is pleased to share this first episode in a series of podcasts on epilepsy. With thanks to a grant from the Alison Hillman charitable trust, the podcasts will aim to improve the resources available for young people with epilepsy.

We publish this episode just before Purple Day this Sunday, 26 March, an annual international event dedicated to increasing awareness of epilepsy.

Evalyn Usher, a medical student who interned with the Medicines for Children team in summers 2021 and 2022, interviewed Fiona and Karen. Fiona was diagnosed with epilepsy when she was 11 years old. Her seizures have no obvious trigger and she's tried different anti-epileptic drugs to manage these, and help her live a full and sociable life. Her mum, Karen was at first worried about the misconceptions and stigma around epilepsy, the 'terrifying seizures' and how the condition would affect her daughter's future. But now she's learned more and what to do.

It's a fascinating discussion, and we hope it's both reassuring and inspiring to families.

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More about the podcast

Fiona was diagnosed with epilepsy at around 11 years of age, which is much later than for some children, and her seizures have no obvious trigger – Fiona doesn’t know when she is going to have one. Fiona has tried five or six different anti-epileptic drugs and is currently taking two. Whilst these have not stopped her seizures altogether, they have reduced the frequency. Nevertheless, it is clear from the podcast that Fiona lives a full and sociable life.

As an “older mum”, Karen was initially worried about the misconceptions and stigma that used to surround epilepsy and how the diagnosis might affect Fiona’s future. She is frank about how difficult she found the diagnosis and the period when Fiona had frequent seizures and they were trying different medicines. While she described early seizures as “terrifying”, and the fear of not knowing when one might happen, she has learnt to cope, and is now more matter of fact because she knows what is happening and what to do.

Fiona’s strategy has always been to be open about her epilepsy. In primary year 7 she did a presentation to her class explaining different types of epilepsy and what to do if someone has a seizure. Fiona is now active in the RCPCH Epilepsy12 Youth Advocates and is keen to increase awareness of epilepsy among children and young people, and to develop suitable information leaflets, as existing information is mostly for young children and adults. Fiona also wants to raise awareness of epilepsy in schools, as well as the mental health issues that young people living with epilepsy may face; she talks about the valuable support she received from a clinical psychologist.

Fiona and her mum talk about practical measures they take: Fiona’s friends know she has epilepsy, and what to do if she has a seizure. Fiona always has her mobile phone with her and a medical alert bracelet with her Dad’s phone number. She also has an Epilepsy Seizure Plan that she can share with school and college for example.

Karen’s advice to parents of a child with epilepsy is to be open about the condition. She emphasizes the value of talking to friends, family and health professionals for support and to develop coping mechanisms. Fiona finds talking with other people who live with epilepsy very useful and supportive – and she counsels against scary stories on the internet!

We hope this podcast will be useful and reassuring to families living with epilepsy or who are adjusting to a new diagnosis. Fiona and Karen are honest about how they have learnt to live with the condition, which we hope will inspire other families.