Epilepsy myths debunked as study reveals most Brits still believe misconceptions about the condition

Woman showing purple ribbon, to represent epilepsy day. (Getty Images)
Help people living with epilepsy by improving your understanding of the condition. (Getty Images)

Nearly nine in 10 Brits still believe at least one myth about epilepsy, a new survey shows.

Meanwhile, almost three in five admit to not knowing much about the condition at all.

“Misconceptions have very real consequences for people with epilepsy, that go beyond the health implications of it," says Rebekah Smith, deputy chief executive at Epilepsy Action.

"We hear from many people on our helpline and in local groups who have been treated differently because of their condition, whether this was at work, at school, or in relationships.

"While this doesn’t always come from a place of discrimination, it does contribute to the stigma, and making people feel like they don’t belong, or that they’re viewed negatively because of something they can’t help."

So, to help combat this and improve understanding, the charity has set out to debunk the most common epilepsy misconceptions for this year's international awareness day – Purple Day – on Sunday, 26 March.

Read more: Endometriosis Awareness Month: Fertility experts bust four common myths about the condition

Top three epilepsy myths

1. Flashing lights are the biggest seizure trigger for people with epilepsy

This is the most common myth overall, with more than half (53%) believing it, the study finds.

But while flashing lights can be a trigger for people with photosensitive epilepsy, just 3% are photosensitive, and not all of them are affected by flashing lights, as seizure triggers vary from person to person.

However, if you're unsure, it's always best to check. Without making assumptions, have an open conversation and ask a person directly before exposing them.

Silhouette of young woman standing against illuminated and colourful bokeh lights background in the city at night
While flashing or flickering lights can be a trigger for some people with epilepsy, it's not as common as you think. (Getty Images)

2. If you see someone having a seizure, you should call an ambulance straight away

Not quite – despite a third (36%) of people believing this.

For those who aren't familiar with the condition or how to help, calling an ambulance if someone is having a seizure in front of you may be well-intentioned and seem like the safest response. But it's not actually necessary in most cases.

You only need to call an ambulance straight away if the person's seizure lasts longer than five minutes, you know it's their first one, or they're having multiple in a row without recovering.

Plus, it's useful to be aware of the different types of seizures – which include tonic-clonic, facial, and more –as the first aid required varies for each.

Read more: Motor neurone disease signs and symptoms as Coronation Street character receives diagnosis

Man making emergency call. (Getty Images)
Hold off from calling 999 unless you need to for one of the listed reasons. (Getty Images)

3. If you see someone having a seizure, you should restrain them to prevent them from getting hurt

Nearly one in three (32%) think this is the case. But it's not something you should do if you're trying to give seizure first aid, and could actually be dangerous, Epilepsy Action warns.

This is because restraining or leaning on someone while they're having a seizure can compromise their airways (obstruct in some way), and cause injury and distress, both to the person having one and you if you're trying to help.

Instead, remove any potential dangers and get something to cushion their head. It’s also important to stay with them until the seizure is over and they are fully recovered, says Epilepsy Action.

Read more: Autism: The signs, symptoms and getting a diagnosis explained

For those with epilepsy who are held back by such misconceptions, Rebekah Smith adds, "This Purple Day, we want to ask people to help us tear these barriers down.

"It’s time to listen to the experiences of people with epilepsy, and to take a step to learn more about it."

To find out more about getting involved with fundraisers and on social media, visit Epilepsy Action's Purple Day 2023 website page.

For support, the charity has a range of support services to help people coping with diagnosis and daily life with epilepsy, available online or by calling 0808 800 5050.