Appeal to epilepsy community in Louth to learn more about SUDEP

In advance of SUDEP Action Day on October 15th, Epilepsy Ireland have appealed to people living with epilepsy and their families in Louth to learn more about a devastating aspect of the condition.

SUDEP stands for sudden unexpected death in epilepsy and 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.

Speaking on the importance of knowing about SUDEP, Epilepsy Ireland Advocacy & Communications Manager, Paddy McGeoghegan said:

“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 the estimated 1,280 people with epilepsy in Louth and their family members to learn more by visiting our website, www.epilepsy.ie.”

The organisation has also reiterated its calls for Government to develop a National Strategy to reduce SUDEP and epilepsy-related deaths in Ireland. Last year, research supported by Epilepsy Ireland confirmed the incidence of SUDEP in Ireland for the first time ever; an incidence of 1:1,400, equating to the loss of 33 people per year. Speaking about the organisation’s calls for a national strategy, Paddy said:

“Until now, 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 in Ireland.

“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 invite anyone affected by SUDEP or any epilepsy-related death to share their experience and help us drive this change and we would also make a direct appeal to local Oireachtas members to help us make this a reality.”