A new podcast in support of ‘Purple Day’
The Medicines for Children team have produced a podcast about a young person’s experience of living with epilepsy. In this 30 minute podcast, Fiona – a young person with epilepsy – and her mum, Karen, share their family's experience of living with epilepsy. This podcast is being released on ‘Purple Day’ - an international day dedicated to increasing awareness about epilepsy worldwide. We hope this podcast will be helpful for families living with epilepsy or for those who are adjusting to a new diagnosis.
"Well, we’re still trying to find the right medicine. I’ve been on... five or six different medications?"
In this honest and lively podcast, Fiona, and her mum, Karen, talk about how Fiona’s epilepsy has affected their lives, from the fear and distress when it was first diagnosed through to living well day to day with the condition.
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.
"I did a PowerPoint in front of my whole year, and explained what would happen, the different kinds of seizures that people get, how everybody’s epilepsy is different to them."
Fiona is now active in the Epilepsy12 youth group 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 reading scary stories on the internet!
"I never spoke to anybody. Maybe I should have done. And I would say if it's a diagnosis, and it comes out the blue - which it does - speak to as many people as you can to get the reassurance that;
(1) you haven't done anything wrong
(2) you're not at fault, you didn't do anything to them when they were in the womb
(3) and just talk. Because talking helps.
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.
To support health professionals who work with children and young people with epilepsy, we have produced a poster with QR codes linking to 16 of the most commonly prescribed epilepsy medicines. These posters are designed to be displayed in epilepsy clinics to enable young people and their families to access medicines information instantly. The poster can be downloaded below.
This podcast has been published to coincide with ‘Purple Day’ on Sunday 26th March. Purple Day is an annual international event dedicated to increasing awareness of epilepsy. Patient support organisations such as Young Epilepsy, the Epilepsy Society and Epilepsy Action in the UK are holding events – and getting people to wear purple. You can read more about Purple Day here.
The podcast was commissioned by Medicines for Children, and was funded thanks to a grant from the Alison Hillman charitable trust to improve our support and resources for young people with epilepsy. The interview was carried out by our brilliant medical student Evalyn Usher who worked with us during summer 2021 and 2022. You can here more about her internship work on Medicines for Children here: ‘My internship story’