Sudden Unexpected Death in Epilepsy
Every week there are 21 epilepsy-related deaths in the UK. Fifty per cent of these deaths are caused by SUDEP. In the majority of cases, SUDEP is believed to be preventable through appropriate risk management techniques, such as taking medication at the same time every day.
“What we need to do is reinforce these really simple messages about risk management, which could potentially help to save a huge amount of lives,” Amy says. “Because it’s a difficult subject to talk about, consultants often don’t tell their patients about SUDEP, but if you don’t know that you’re at risk, you can’t manage it.
“When Emily died, none of us had heard of SUDEP. That is our message really: those with epilepsy need to know about this, so that they can act on it. It doesn’t have to be a scary conversation, but it really is such an important one to have.”
For further information about SUDEP, visit the SUDEP Action website at https://sudep.org.
Emily and Amy.