In advance of SUDEP Action Day on October 15, Epilepsy Ireland has appealed to people living with epilepsy and their families to learn more about a devastating aspect of the condition. Sadly, 33 people lose their lives due to Sudden Unexpected Death in Epilepsy in Ireland every year.
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.
Speaking on the importance of knowing about SUDEP, Epilepsy Ireland advocacy and 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 2,986 people with epilepsy in Galway and their family members to learn more."
The organisation has also reiterated it's calls for the Government to develop a national strategy to reduce SUDEP and epilepsy-related deaths in Ireland.
Last year, research confirmed the incidence of SUDEP in Ireland for the first time; an incidence of 1:1,400, equating to the loss of 33 people per year.
McGeoghegan explained, “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.”
For more information, visit www.epilepsy.ie
