A Focus on SUDEP
SUDEP is a word which can strike fear and worry amongst people with epilepsy and their families. In advance of SUDEP Action Day 2022 on October 19th, I was pleased to write about this often undiscussed, rare but devastating aspect of epilepsy.
Written by Paddy McGeoghegan – Epilepsy Ireland Advocacy & Communications Manager
Epilepsy-related deaths can be due to several factors – because of a prolonged seizure (status epilepticus) or seizure-related injury or drowning. Another major cause of epilepsy related deaths is SUDEP. Overall, it is estimated that there are approximately 130 epilepsy related deaths in Ireland each year. Of these, it estimated that 21-40 are due to SUDEP. An Epilepsy Ireland funded study being conducted by Dr. Yvonne Langan of St. James’s Hospital Dublin is currently seeking to establish a clearer picture of SUDEP and epilepsy-related death incidence in Ireland.
SUDEP stands for Sudden Unexpected Death in Epilepsy and is defined where there is death in a patient with epilepsy that is not due to trauma, drowning, status epilepticus, or other known causes but for which there is often evidence of an associated seizure.
Unfortunately, there is still a lot we don’t about SUDEP. Globally, epilepsy researchers are working to find out what the exact causes of it are. It is believed that respiratory abnormalities and/or cardiac arrhythmias play a central role. However, the exact mechanism behind why and how this happens remains unclear.
In the past, it was a subject that many people with epilepsy, their family members and their clinicians did not want to discuss. However, attitudes have changed. In 2020, an Epilepsy Ireland survey of 323 people with epilepsy revealed that 81% of people with epilepsy wanted to know more about SUDEP.
At Epilepsy Ireland, we are hopeful that research will eventually provide the answers to the questions about it we have today. However, in the absence of this breakthrough, it is best to focus on what we DO know, rather than what we don’t.
We do know that the risk of SUDEP varies from low to very low. We do know that it can affect any age group of those living with epilepsy but is more common in younger adults. We do know that the better a person’s epilepsy is controlled, the lesser the risk of SUDEP. We do know that certain types of seizures are not associated with it, such as absence or myoclonic seizures. However, the risk is higher if you have generalised tonic-clonic seizures. We do know that there are risk factors for it – some of which can be reduced by a person better understanding their epilepsy and using techniques to self-manage the condition.
Raising awareness of the risks to the epilepsy community and how they can be modified is the key aspect of SUDEP Action Day. There are actions that can be taken to help reduce the risk of SUDEP. Ensuring that people with epilepsy and their families are aware of these risks could help to avoid a potentially preventable death.
On SUDEP Action Day, we also share stories from families who have sadly lost a loved one due to SUDEP. These harrowing stories lay bare the impact of this rare but devastating aspect of epilepsy. Unfortunately, a common thread amongst these stories is how the person themselves or the wider family were unaware of SUDEP.
As Hospital Professionals in varying areas of our health service, the opportunity to discuss SUDEP may present to you. Our message is to have the conversation. Our most recent survey found how people with epilepsy want to know about SUDEP whether perceived at being at high risk or not; they want to know about it sooner rather than later; and they want to hear about it from their trusted medical teams.
Knowledge is power for our community – and simply knowing about SUDEP could make a substantial difference to how that person approaches and manages their condition.
I would invite readers of Hospital Professional News to join with us on October 19th to raise awareness of SUDEP; what can be done to reduce the risks; and remember those who are no longer with us. Please check out our website and all our social media channels in the lead up to the day and on the day itself.
Our team are here to assist your patients with any information they may require on SUDEP so please do not hesitate to get in touch with us if we can assist you in any way.
Visit www.epilepsy.ie to learn more about the disease and SUDEP Action Day.
Some of the key findings of the 2020 Epilepsy Ireland survey on SUDEP
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