My epilepsy is so sensitive that a seizure can be triggered by camera flashes or the sun shining through the railing… and I can never go to a nightclub again
You have probably heard on the TV news: ‘Warning, the report below contains flash photography.’
If you thought it was a bit over the top, Harry Jones will tell you otherwise.
If he sees this on a screen, he must leave the room immediately. Likewise, when Harry books tickets for a concert or goes to a club, he always checks: are there flashing lights or photography?
The 26-year-old from Wrexham has photosensitive epilepsy, where seizures are triggered by flashing lights. This could be strobes, the flash of a camera or phone, even the flickering of sunlight through trees – as well as flashing lights on TV.
And even if warnings appear on TV or in the cinema, they may not be current enough. When Harry went to watch the movie The Incredibles, a warning flashed at the beginning.
Harry was diagnosed with photosensitive epilepsy at the age of 17. “I had spasms in my arms and legs and they could last seconds or minutes, but I thought I was just tired,” he says.
In photosensitive epilepsy, seizures are caused by flashing lights. These can be flashes, the flash of a camera or phone, but also flash lights on TV (stock image)
“I immediately got up to leave, but the flash photography had already started and I immediately got sick and had to go,” he recalls. (Nausea can be a sign of an impending attack.)
Epilepsy is ‘like an electrical short circuit in the wiring of the brain’, explains Professor John Duncan, a consultant neurologist at University College London Hospitals.
‘In photosensitive epilepsy, signals from flashing lights are transmitted to nerve pathways at the back of the brain, where vision is interpreted: they set nerve cells in that area in motion like a spark, which then causes a seizure.’
Harry was diagnosed at the age of 17. “I had spasms in my arms and legs and they could last seconds or minutes, but I thought I was just tired,” he says.
‘One day I was at university, climbing a ladder for a theater show, when I suddenly felt myself shaking and jerking. I was in a safety basket, so I was safe, but my hands were cramping.”
It took 45 minutes for university staff to take him down. Harry was taken to A&E where he was given an EEG to monitor brain activity.
Harry recalls: ‘Afterwards a neurologist sat me down and said I had epilepsy and had probably had it since birth. I was shocked. Yes, I’ve had some spasms over the past few months, but nothing serious.’
He HAD further testing to identify his triggers. During these tests, Harry suffered many seizures: as he describes ‘it was torture and I was exhausted afterwards’.
Photosensitive epilepsy affects around 3 percent of the 600,000 people in Britain who suffer from epilepsy
The tests confirmed he had photosensitive epilepsy, a disease that affects around 3 percent of the 600,000 people in Britain with epilepsy.
It means avoiding strobes and strobe lights, but also being careful in low sunlight.
‘A trigger for an attack could be that you drive when the sun is low and there are trees along the road. This movement creates a strobe effect,” says Professor Duncan.
‘Another example is when someone is walking along the railing of the park and the low sun shines through and produces a flickering light.
‘If the sun shines on the sea and you flicker through the waves, that is possible, just like fireworks.’
He adds: ‘Anyone with a possible diagnosis of epilepsy will have an EEG and the photosensitive tests as part of standard protocols. Flash lights will shine on them, starting at a low frequency and increasing to 30 per second.”
Harry had never had a problem with light before and had no idea what had caused the episode at university, but after his diagnosis he was prescribed an anti-epileptic drug, sodium valproate. Life then became very limited.
Television and movies are strictly regulated to avoid frequencies that are dangerous for people with epilepsy
‘I couldn’t go dancing or going to clubs anymore because people were using camera phones (he doesn’t mind flashes). “I had been there before and nothing had happened, but now I was afraid it would,” he says.
‘I couldn’t have my picture taken with a camera or a phone flash.’
When he graduated from college (he studied events management), “I had to wait until the end – of 300 people – to receive my diploma,” he recalls.
‘I had to sit off to the side with sunglasses to avoid flash photography. But even when it was my turn, the photographer refused to use the flash and I threw up afterwards. It was horrible.’
After being diagnosed, Harry went on to play rugby in France in the Wheelchair Rugby League, for the North Wales Crusaders and the Wales International team.
(He played the wheelchair rugby league before his diagnosis, as this includes both disabled and non-disabled players, but Harry cannot now play ‘normal’ rugby due to the risk of head contact.)
During the tournament, Harry suffered convulsions after a mass of flash photography by tournament spectators and media personnel. “I blacked out for a short time and had to be given a sedative to keep me under control,” he says.
Another danger is flash photography in movies or news reports, he says. ‘It’s all very well warning viewers that flash photography exists, but they don’t always explain exactly how long or when it’s coming.
‘Sometimes you leave the room for an unnecessarily long time, while at other times you think the flash has passed and then it comes again. I think they should specify exactly how long the flashes last to be safer.”
These warnings follow guidance from the then Independent Television Commission regarding flash photography in 1994.
As Professor Duncan explains: ‘TV and films are tightly regulated to avoid frequencies that are dangerous to people with epilepsy.’
But elsewhere this is not necessarily the case. ‘A few years ago there was a well-known situation in Japan when an episode of the Pokémon TV series had a sequence where they had dark red and dark blue flashes at a rate of between ten and twenty flashes per second – and many children watching in Japan, had seizures at the same time.’
Professor Duncan adds that event venues such as nightclubs have strict rules to avoid potentially harmful light frequencies, but at informal events – such as a rave in a barn – ‘there is the possibility of flashing lights, so patients should be alert to the possibility’.
Although going to clubs is something Harry can control, there are other risk factors he cannot control.
“If I’m driving and the sun is low and flickering through the trees, it would trigger a seizure,” he says.
Therefore, when driving, he wears tinted glasses or turns the sun visor to cover the sun.
“Even a Venetian blind can trigger an attack because sunlight passes through the slats,” he says. Therefore, his parents, sister and in-laws removed them from their homes.
His life has changed in other ways. “My medication makes me feel unwell in the morning, so I had to work later in the day, which wasn’t always attractive to employers,” he says.
Harry used to work for social services, but is now between jobs.
But although his condition limits his social life – Harry says he is constantly on edge and alert to any risk – his friends and fiancée Nadine in particular are ‘a great support’.
“Nadine was the one who encouraged me to get tested in the first place,” he says.
‘People need to understand that flashing lights can be incredibly dangerous for people with photosensitive epilepsy.
‘And they should keep in mind that they don’t always use their camera flash or fancy flash lighting at weddings or events without thinking.
‘It makes it so much more difficult for people with epilepsy to lead a social life without worries.’