Call for targeted action to reduce epilepsy-related death numbers

New research has revealed the first-ever national data on the incidence of sudden unexpected death in epilepsy (SUDEP) in Ireland. SUDEP is the sudden, unexpected death of someone with epilepsy, where no other cause of death can be found.

The study, led by Dr Yvonne Langan of St James’s Hospital Dublin and TCD, together with the HRB, examined data from all deaths referred to coroners in 2019, identifying those with a history of epilepsy. 

The research identified 33 cases of definite SUDEP in 2019, representing an incidence rate of 1:1,400 per annum among people living with epilepsy. Of the 33 cases, 21 were men and 12 were women, with ages ranging from nine to 81.

Dr Langan said the study will shape the treatment of epilepsy patients in future.

She said: “Ireland-specific data is vital in shaping effective healthcare policies. The findings will help raise awareness of SUDEP within both the patient and medical community and I hope will support tailored interventions to reduce risk for patients in the future.”

While the exact reasons for SUDEP occurring in some people with epilepsy is unknown, previous research has shown that having uncontrolled or untreated tonic-clonic seizures is the biggest risk factor. 

Peter Murphy, CEO of Epilepsy Ireland, said not enough is known about SUDEP, even within the Irish epilepsy community.

He said: “This study is a significant step forward in our understanding of the extent of SUDEP in Ireland.

“SUDEP is the most devastating consequence of epilepsy and over the years, we have met with far too many bereaved families who were not aware of SUDEP until their loved one passed away. 

“We know that at least some of these deaths can be prevented by ensuring that more people with epilepsy become seizure-free and remain that way.”

Ongoing research will focus on identifying the total number of epilepsy-related deaths in Ireland. This data is expected to be published in the coming months and according to Epilepsy Ireland, will further highlight the urgent need to develop a new strategy to reduce SUDEP and epilepsy-related deaths.