Charity Calls for National Strategy to Combat Epilepsy Deaths

A leading charity has urged for a national strategy to address the alarming rate of deaths from Sudden Unexpected Death in Epilepsy (SUDEP) in Ireland. According to research published last year, approximately 33 people die from SUDEP each year in the country. This call to action was made by Epilepsy Ireland, coinciding with SUDEP Action Day, an international awareness initiative aimed at highlighting this critical issue.

Paddy McGeoghegan, the advocacy and communications manager for Epilepsy Ireland, emphasized the need for state-led initiatives to combat this preventable cause of death. “Most of the initiatives taken around SUDEP have been led by Epilepsy Ireland, often supported by the fundraising efforts of bereaved families,” he stated. McGeoghegan stressed that reliance on these efforts is insufficient and that a coordinated response from government entities is essential.

SUDEP occurs when an individual with epilepsy dies, and no other cause of death is determined during a post-mortem examination. Many victims are young and otherwise healthy, making these deaths particularly tragic. While the precise causes of SUDEP remain unknown, factors such as frequent seizures, non-adherence to medication, and substance abuse have been identified as potential risk factors. McGeoghegan noted, “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.”

Tragically, many bereaved families often report that they first learned about SUDEP only when it appeared on their loved one’s death certificate. “This must change,” McGeoghegan argued. He believes that increasing awareness of risk factors could save lives, as many are modifiable. He proposed that developing a communication strategy around these risks could be pivotal in reducing SUDEP and other epilepsy-related deaths in Ireland.

Research led by Dr. Yvonne Langan from St. James’s Hospital, Dublin, confirmed the statistic of 33 annual SUDEP fatalities. Ongoing studies aim to further investigate the overall incidence of epilepsy-related deaths, which may include deaths resulting from seizure-related injuries or drowning, as well as prolonged seizures known as status epilepticus.

“We now have the data. We know the scale of the issue. What we need is action,” McGeoghegan concluded. He called for leadership and a unified response from various governmental sectors to prevent future deaths. “We are appealing to the Government and all Oireachtas members to help us make this a reality so we can take a coordinated approach to try and save lives.”

The urgency of the situation cannot be overstated, and Epilepsy Ireland is advocating for immediate attention to ensure that SUDEP is no longer a hidden tragedy in society.