Law tutor Jane Hanna, whose boyfriend died of epilepsy eight years ago, today spearheads a Government-backed national investigation into the condition.
Jane, 36, a part-time tutor at Oxford's Keble College, formed Epilepsy Bereaved as the first organisation in the world dedicated to answering why epilepsy sufferers die.
She said: "Every year about 1,000 people die in the UK as a result of epilepsy.
"Some of these deaths result from accidents, or from a particular condition known as status epilepticus in which a person suffers prolonged seizures which can become life-threatening. But the majority of deaths are not adequately explained." The charity, based at Jane's home in Charlton Road, Wantage, was formed after her then boyfriend, barrister Alan Pring, 30, died in his sleep five months after being diagnosed.
It is believed Alan's condition was caused by driving each day past a line of trees with sunlight flickering through the gaps in the branches. This has been known to spark epilepsy.
Jane said: "It developed out of the blue. He was a very healthy person and the advice given by doctors at the time was that as long as he kept taking his medication he had nothing to worry about." A post-mortem examination found that Alan died of suffocation, which Jane believes is misleading.
Hilary Mounfield, chairman of the Joint Epilepsy Council, said: "Researchers believe that some of these deaths may be preventable through better management. But I do want to stress that most people whose seizures are well controlled are not considered at risk."
Story date: Tuesday 26 October
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