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#SUDEPActionDay2023 – Learn more about SUDEP

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Kieran O'Connor and Noel Kelly and EI/SUDEP Action Logos

October 18th is SUDEP Action Day – an incredibly important day for the entire epilepsy community.

The day aims to raise awareness of Sudden Unexpected Death in Epilepsy – a rare but devasting aspect of the condition. It is estimated that between 21 – 44 people pass away due to SUDEP in Ireland each year.

While what exactly causes SUDEP remains unknown, research has identified several factors which can increase a person’s risk of SUDEP. It is vitally important for everyone within the epilepsy community to be aware of these risks and potential actions to reduce them.

Today, and across this week, we are appealing to people with epilepsy and their families to learn more by visiting the ‘SUDEP’ section of our website.

Alongside the above, #SUDEPActionDay is an opportunity day to remember all those who have passed away due to SUDEP – and any other epilepsy-related death. In total, it is estimated that there are 130 epilepsy-related deaths in Ireland every year. Today we are thinking of all those who have passed away due to SUDEP or an epilepsy-related death, and the loved ones they have left behind.

Ar dheis Dé go raibh a n-anamacha.

As part of our activities for SUDEP Action Day across the week, we are also highlighting the Epilepsy Deaths Register for Ireland. The register is a collaboration between Epilepsy Ireland and our colleagues in SUDEP Action. Knowing why people with epilepsy have died, allows researchers to build a better picture of the condition and helps keep people safer in the future - potentially helping to prevent future deaths.

If you have lost a loved one who lived with epilepsy - even where the stated cause of death isn't necessarily epilepsy-related – we are appealing to you to please consider providing details to the Epilepsy Deaths Register for Ireland. You can do so by visiting the ‘Epilepsy Deaths Register for Ireland’ website.

Hearing from families who have been directly affected by SUDEP is also a key part of our awareness-raising-efforts for SUDEP Action Day. As part of #SUDEPActionDay2023, we have been privileged to have two families step forward and share their experiences of losing a loved one due to SUDEP. These powerful testimonies show why continued education and communication around SUDEP is so important and highlight the devastation which can be caused. We would like to sincerely thank both Jenny Kelly and Orla O’Connor, and their wider families, for sharing Noel and Kieran’s stories. You can read both of these on our website below:

In addition to the above, we have also released the initial findings of a patient survey we conducted on SUDEP Awareness. The findings show that people with epilepsy and their families want to know about SUDEP as early as possible, from their neurologist, whether they are deemed at high risk or not. You can read about these initial findings from our survey by visiting the ‘News’ section of our website.

The responses to the survey will be vital to furthering our calls to develop a National Strategy to reduce SUDEP and epilepsy-related deaths in Ireland – a call we initially made last year as part of SUDEP Action Day. In the coming months, an Epilepsy Ireland supported study will publish its findings which will for the first time, provide data on the true Irish prevalence of SUDEP and epilepsy-related deaths.

The figures presented must act as a catalyst for developing a strategy to reducing the stated numbers. Similar strategies have worked in reducing road deaths, smoking related and alcohol related deaths and it is past time that such a strategy be in introduced in an epilepsy context. In anticipation of this study releasing its findings, we contacted all members of the Oireachtas in advance of SUDEP Action Day highlighting key information and seeking support for our plans to introduce such a strategy in Ireland. We will provide further updates on this study and our calls for a national strategy on our website and social media channels. We look forward to working with all stakeholders and policy-makers to make this strategy a reality.

On this important day for the entire epilepsy community, we would like to once again repeat our appeal to all people with epilepsy and their families to learn more about SUDEP – it is vital information to know – and also appeal directly to healthcare professionals to ensure that discussions on SUDEP are part of their consultations with people with epilepsy.

Visit the SUDEP Section  of our website to learn more