Michael McHale , 2025-10-15 05:00:00
Around 33 people in Ireland thought to die from sudden unexpected death in epilepsy annually
A national strategy is needed to save lives from sudden unexpected death in epilepsy (SUDEP), a leading charity has said.
Epilepsy Ireland made the call after research published last year found that on average 33 people in Ireland die from SUDEP annually.
“Most of the initiatives taken around SUDEP have been led by Epilepsy Ireland, often supported by the fundraising efforts of bereaved families,” said Paddy McGeoghegan, advocacy and communications manager for Epilepsy Ireland.
“We cannot continue to work in isolation on this issue and depend solely on the fundraising efforts of bereaved families to drive action on reducing SUDEP and epilepsy-related deaths.”
SUDEP is confirmed when someone with epilepsy dies and no other cause of death can be found during the post-mortem. Many of those who die are often young and otherwise healthy.
While the exact causes of SUDEP are unknown, there are known factors that can increase a person’s risk of death. This includes having frequent seizures, not taking medication as prescribed and alcohol or substance abuse.
“Knowledge is power and unfortunately, SUDEP is something that many people with epilepsy and their families – and even healthcare professionals – do not know enough about,” added Mr McGeoghegan.
“Unfortunately, in speaking with bereaved families, we often hear the devastating story that the first time they heard about SUDEP is when it is listed in their loved one’s death certificate.
“This must change. We owe it to the families who’ve lost loved ones and those who’ve been lost to ensure that SUDEP is no longer a hidden tragedy. Awareness of the risk factors can save lives, as many of them are modifiable. Action on the communication of risk could be the cornerstone of the development of a potential strategy to reduce SUDEP and epilepsy-related deaths in our country.”
The charity made the call on SUDEP Action Day – an international awareness day for sudden unexpected death in epilepsy.
Research led by Dr Yvonne Langan of St. James’s Hospital, Dublin, found that 33 people pass away from SUDEP every year. Studies are continuing to establish the incidence of total epilepsy-related deaths in Ireland, which would also include deaths due to seizure-related injuries or drowning, and prolonged seizures (status epilepticus).
“We now have the data. We know the scale of the issue. What we need is action,” concluded Mr McGeoghegan.
“We’re asking for leadership and a coordinated response involving the various arms of the state to prevent future deaths.
“We are appealing to Government and all Oireachtas members to help us make this a reality so we can take a co-ordinated approach to try and save lives.”
