Young Hackney cycling enthusiast died after he stopped taking epilepsy medication

Poplar Coroners Court

Poplar Coroners Court - Credit: Archant

The mother of a young cycling enthusiast from Hackney who died in his sleep just days after stopping his epilepsy medication does not feel the risks associated with his condition were emphasised by doctors.

James Lewis, a Bristol University maths student, was just 22 when he died on April 10 at home in Winston Road, Stoke Newington, where he lived with his mum and sister.

Mr Lewis, an avid cyclist who built his own polo bike, had an initial epileptic seizure aged 15, but was not affected again until five years later when he had several nocturnal seizures.

Despite taking anti-epileptic medication he continued to have fits.

It was only after his death that his family discovered through a friend he had stopped taking the anti-seizure tablets – which affected his memory – days before his death.

His mother Florence Harvey told an inquest at Poplar Coroner’s Court that “Jamie was a much loved and loving son and brother”, who was “fun-loving, unconventional and never followed the crowd”.

She said: “We feel the risk of dying from his condition wasn’t highlighted sufficiently, partly because he was in a very high risk category because of his gender and his age.”

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She only realised the gravity of the situation following his death through the website of charity SUDEP Action, which campaigns for greater awareness of Sudden Unexplained Death in Epilepsy which is still not properly understood.

Almost half of the 1,200 epilepsy related deaths a year in the UK are caused by SUDEP, and the charity claims many would have been potentially avoidable had the people with epilepsy been fully informed to make the right lifestyle choices.

Ms Harvey said: “We are left feeling we underestimated the risks of his condition. Unlike cot death, the public remains largely unaware of SUDEP.

“Jamie may have thought he didn’t have a risk, he was young and healthy and fit, but all of those things weren’t a plus for him.

“The tone was quite offhand, it didn’t feel like, “You have this thing that could kill, and you being young and male and nocturnal puts you in a high risk group.”

A post-mortem showed Mr Lewis had not bitten his tongue – one of the signs of a seizure – and pathologist Lina Keho said he may have simply died in his sleep through SUDEP.

Coroner Mary Hassell ruled he died of natural causes, and said: “We know people with epilepsy are more likely to die than the general population.

“Most people with epilepsy don’t die and go on to live a long life largely unfettered by epilepsy, people with epilepsy don’t want to restrict their lives, I can completely understand if you are a young person told there’s a one in 400 risk of dying you wouldn’t think you will be the one.

“Perhaps young people are more at risk of dying of epilepsy because when you are younger you feel you are invincible, if it had been more impressed on him Jamie may have acted differently, it may have affected the outcome it may have not, Jamie had been told of the risk of death.”

Mr Lewis’ friends and family raised nearly £7,000 for SUDEP Action through a charity bike ride from London to Bristol on what would have been his 23rd birthday.