Sudden unexpected death in epilepsy (or 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.
In advance of SUDEP Action Day on October 15th, Epilepsy Ireland have appealed to people living with epilepsy and their families to learn more about a devastating aspect of the condition. While the exact mechanism behind SUDEP is unknown, there are known factors that can increase a person’s risk, including having frequent seizures, not taking medication as prescribed and alcohol or substance abuse.
Speaking on the importance of knowing about SUDEP, Epilepsy Ireland Advocacy & Communications Manager, Paddy McGeoghegan said that the condition was something that people ‘do not know enough about’.
“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.
“Throughout October, we will be sharing educational resources, personal testimonies, and expert insights to help the public and healthcare professionals better understand SUDEP and how to reduce risk. I would particularly appeal to people with epilepsy and their family members to learn more by visiting our website, www.epilepsy.ie.”
The organisation has also reiterated their calls for Government to develop a National Strategy to reduce SUDEP and epilepsy-related deaths in Ireland.
