Media Statement
Epilepsy Ireland have called for the development of a state-led National Strategy to reduce SUDEP and epilepsy-related deaths in Ireland.
The national patient organisation representing people with epilepsy and their families have made their calls on SUDEP Action Day – an international awareness day for Sudden Unexpected Death in Epilepsy.
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 mechanism behind SUDEP is unknown, there are known factors that can increase a person’s risk of SUDEP. This includes having frequent seizures, not taking medication as prescribed and alcohol or substance abuse.
Epilepsy Ireland supported research published last year – led by Dr. Yvonne Langan of St. James’s Hospital, Dublin – found that 33 people pass away from SUDEP every year. Research is continuing to establish to the incidence of total epilepsy related deaths in Ireland – deaths from SUDEP and deaths because of seizure-related injuries or drowning, and prolonged seizures (status epilepticus).
According to Epilepsy Ireland, the figures show the need for a national strategy to save lives, with their Advocacy & Communications Manager, Paddy McGeoghegan commenting:
“Most of the initiatives taken around SUDEP have been led by Epilepsy Ireland, often supported by the fundraising efforts of bereaved families. 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.
“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. 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.”
“We now have the data. We know the scale of the issue. What we need is action. 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.”
Throughout October, Epilepsy Ireland are sharing educational resources, personal testimonies, and expert insights to help people with epilepsy and their families better understand SUDEP and how to reduce risk – more on this can be found by visiting www.epilepsy.ie.
ENDS
Further Information
- To find further information on SUDEP, visit the 'SUDEP' section of our website
- To read Margaret's story about the loss of her daughter Lisa to SUDEP, visit the 'SUDEP Action Day' section of our website
- To read Lucy's story about the loss of her son Luke to SUDEP, visit the 'SUDEP Action Day' section of our website
- More information on the incidence study referenced in this statement can be found by visiting the 'News' section of our website
- Watch our video with Dr. Yvonne Langan
Dr. Langan is a Consultant Clinical Neurophysiologist at St James’s Hospital. In this video, first aired at our 2025 National Conference and recorded for SUDEP Action Day 2025, Dr. Langan speaks with our Advocacy & Communications Manager, Paddy McGeoghegan. They discuss the Epilepsy Ireland–supported research that investigated the incidence of Sudden Unexpected Death in Epilepsy (SUDEP) in Ireland - as well as topics such as SUDEP communication, awareness and risk. The publication of Dr. Langan's research on the incidence of SUDEP in Ireland forms the foundation for one of Epilepsy Ireland’s key advocacy campaigns - developing a national strategy to reduce all epilepsy-related deaths in Ireland. This research is now continuing to establish the incidence of all epilepsy-related deaths in the country. To learn more about SUDEP as from an expert working in this field, it is well worth 25 minutes of your time... -
Jazz Pharmaceuticals has provided a hands off unrestricted grant to help fund the production of this video as part of Epilepsy Ireland's campaign around SUDEP and SUDEP Action Day. Jazz have had no involvement or input into the content of the video.
- If you need any information or support on your or your loved one’s journey with epilepsy, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the ‘Our Local Service’ page on our website.