London Coroner calls for openness on SUDEP to encourage young people to take epilepsy medications
James Lewis, a 22 years old maths student at Bristol University, died suddenly at his home in his sleep earlier this year. James had his first seizure at 15 and was then seizure-free until two years before his death when he had several nocturnal seizures. He was on medication but his inquest revealed that in the lead up to his death he had decided to stop taking his epilepsy medications.
James’s mother Florence Hervey said: “Jamie was a much loved and loving son and brother”, who was “fun-loving, unconventional and never followed the crowd…We feel the risk of dying from his condition wasn’t highlighted sufficiently”
London Coroner, Mary Hassell ruled that James died of natural causes, but said: “We know people with epilepsy are more likely to die than the general population…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, if Jamie had been told of the risk of death.”
Public health experts estimate that the lifetime risk of SUDEP for someone whose epilepsy starts at 15 is just over 7%.
Jane Hanna, CEO of SUDEP Action: “We welcome the call for openness by the coroner in this inquest. Coroners play a vital role in gathering information when these tragic deaths occur and help to monitor potentially avoidable deaths. The public health burden of SUDEP is substantial and remains underestimated. We need more research but we also need openness, education on simple messages that may save lives”.