Purple Day: dispelling epilepsy myths

Karl Bates is sharing his personal experiences with epilepsy to raise awareness and understanding of the condition.

Karl (pictured above, centre, with former professional footballer Christian Ribeiro), a possession assistant for our Wessex route and diversity and inclusion champion at Network Rail, says learning more about epilepsy is vital.

This includes knowledge of the condition, how it varies and of how to help someone having a seizure remains limited.

This Purple Day – an international day of awareness of epilepsy – we find out how Karl is reaching tens of thousands of Network Rail employees and the many people travelling on the railway.

About epilepsy

Epilepsy is a neurological condition. When someone has been diagnosed with epilepsy, this means that they have a tendency to experience epileptic seizures.

A one-off seizure is not necessarily caused by epilepsy; it’s often diagnosed if someone experiences more than one seizure and is expected to have more.

It’s very common, affecting about 600,000 people – with almost 1 in 100 living with the condition – in the UK, according to charity Epilepsy Action. Every day, about 87 people in the UK are diagnosed with epilepsy.

“Epilepsy is a condition I live with, not a condition I suffer from.”

Karl’s condition, which was diagnosed about 20 years ago, doesn’t directly affect him day to day, thanks to medication.

Seizures occur when the brain experiences a sudden and intense burst of electrical activity, mixing up messages between cells. Medicine can help stop or reduce the number of seizures but it doesn’t cure epilepsy.

Karl said: “When you have a seizure, it’s scary, it’s seriously upsetting. One of the main reasons is because I could have a seizure tonight or never again. I have been seven and a half years without a seizure before and you think ‘epilepsy is a thing of the past’ and then I had a seizure and it is back to square one as it is a reminder that my epilepsy can never be cured, simply managed.

“In the early days of epilepsy, I must be honest, I was simply petrified. My confidence took a huge knock and I struggled to function.

Karl with Countdown co-presenter Rachel Riley

“To have a serious condition that couldn’t be controlled put the fear of God in me and I suffered with panic attacks and insomnia. In time, with the help from friends and family, I learned to turn the negative into a positive.”

Since his diagnosis, Karl has turned a lifelong passion for football into a career as a freelance football commentator and has worked alongside some of the most famous faces in football, from David Beckham to Gary Lineker.

He is also a former stand-up comedian and was recently a contestant on game show Countdown – with the teapot to prove it after his three wins.

Karl with former professional footballer Steve Kabba and mid-match

Vital information

With Epilepsy Action, which provides advice, information and support, Karl has spoken at conferences all over England about what it is like to live with the condition and plans to host a football tournament in which people who live with epilepsy will play with former professional footballers.

Network Rail complements Karl’s life outside work and has helped improve his well-being, thanks in part to the encouragement and empowerment he feels to speak openly about epilepsy.

He said: “I love the diversity within [Network Rail] and the fact everyone from every background is treated as an equal. I developed epilepsy in 1999 aged 23 whilst working at the company… Even though I lost my driving license people were on hand to help me by giving me lifts home or to the station.”

People are naturally fearful of epilepsy, he said – something he hopes to change through open discourse and vital information that he believes should be more commonly taught in first aid training.

First aid for people with epilepsy is simple – Karl’s eight-year-old son has learnt how to respond to a seizure and to always phone for an ambulance. Find out how you can provide first aid to someone who needs it:

What to do when someone has a seizure

Find out more at Epilepsy Action

Purple Day