Today is SUDEP Action Day and is one of the most important days in our annual calendar as we raise awareness of Sudden Unexpected Death in Epilepsy amongst the epilepsy community across Ireland.
The day remembers loved ones who have been lost to SUDEP and other epilepsy-related deaths, as well as helping to educate people with epilepsy and their families on measures which can be taken to mitigate the risks of SUDEP.
As part of this article, we have signposted information we have shared across social media, as well as highlighting national media coverage SUDEP Action Day 2024 has received.
- The key part of SUDEP Action Day is encouraging people with epilepsy and those living with someone with epilepsy to learn more about SUDEP and what can be done to mitigate risk. Visit the ‘SUDEP’ page on our website to learn more.
- We are also appealing to people who have lost a loved one with epilepsy to provide information about their loved one to the Epilepsy Deaths Register for Ireland. By providing information to the register, this could provide vital clues to researchers on why a person with epilepsy has died, potentially leading to the prevention of future SUDEP and epilepsy-related deaths. Visit the Epilepsy Deaths Register for more information.
- As part of our activities around SUDEP Action Day 2024, two families have shared their experience of losing loved ones due to SUDEP on our website – highlighting the devastation caused by this aspect of epilepsy and why we need increased communication around it.
Read the Cormican’s story about the loss of their son and brother Tadgh
Read Natanya’s story about the loss of her twin sister Natasha - As part of SUDEP Action Day, we have released the findings of the first ever study of its kind which has established the true incidence of SUDEP in Ireland. The incidence has been established as 1:1400, equating to the loss of 33 individuals in Ireland every year. You can read more about this study by visiting the ‘News’ section of our website.
- With the publication of this study, Epilepsy Ireland have formally launched a new advocacy campaign by writing to the Minister for Health, calling for the development of a National Strategy to reduce SUDEP and epilepsy-related deaths in Ireland. You can read our correspondence to the Minister by visiting the ‘News’ section of our website.
- The author of this new study, Dr. Yvonne Langan, was interviewed on RTÉ’s Morning Ireland alongside Tina Hartigan and Katie Young – mother of the late Louise Young, who sadly passed away from SUDEP in 2021. You can listen back to this piece by visiting the RTÉ website.
- RTÉ have also featured the study online, alongside Tina & Katie’s story, as well as our new campaign. You can read this by visiting the RTÉ website.
- The Irish Independent have also featured interviews from Arabella Scanlon on the loss of her daughter Brianna and Tina Hartigan on the loss of her daughter Louise. These can be found by visiting the Irish Independent website.
- The incidence study, Tina & Katie's story about the loss of Louise and Epilepsy Ireland's calls for a national strategy were all featured in the RTÉ 6:1 News. You can watch this back by visiting the RTÉ website. The feature is on at the approx 35 minute mark.
We would like to thank everyone for their support for SUDEP Action Day and we hope that with co-ordinated action, as called for in our new campaign, that this will lead to the prevention of future SUDEP and epilepsy-related deaths.
Finally, our thoughts are with all those who have lost a loved one due to SUDEP or an epilepsy-related death. We hope that our new campaign in this area will help to prevent other families going through what you have experienced over the years.
Ar dheis Dé go raibh a n-anamacha.
If you need any information or support around your or a loved one's epilepsy, please do not hesitate to get in touch with your local Community Resource Officer. You can find their details by visiting the 'Our Local Services' section of our website.