SUDEP Action

Making every epilepsy death count
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Online Epilepsy Memorial Day 2022

Online Epilepsy Memorial Day is an extremely important date in SUDEP Action’s calendar.

Whether you are recently bereaved or whether you were bereaved some time ago, know you are not alone. Our community gets it that grief can make you feel isolated. It can make you feel like the world is carrying on around you and you’re no longer part of it. SUDEP Action is here throughout the year but we hope this special day is helpful in connecting people – who share the bond of having experienced devastating personal loss – by remembering and reflecting in a spirit of support.

The difficulties that communities of bereaved families and friends face are understood by those who have lived it – and by those who are alongside. Many families have not only lost a treasured loved one out of the blue but, in some cases, their struggles before a death have been foreshadowed by the consequences of under supported services for epilepsy and everything that brings. The numbers of suddenly bereaved families through the pandemic who have had to face the severest of struggles before and after a death is so very devastating. Some families suddenly bereaved since the pandemic have faced losing someone whilst they were waiting for a diagnosis or access to treatment. They have also had to contend with after-death investigation and coroner services that continue to be hard hit.

The pandemic and ‘living with Covid’ has not only impacted the way we live our lives, but also how we can grieve. My heart goes out to all.

Online Epilepsy Memorial Day has had a special part to play through the pandemic. Lighting candles and coming together to share our posts, video and comments on social media at the same agreed time has allowed people to connect from wherever they are in the UK and across the world. We might not have been able to gather physically in rooms but we’ve united in thoughts. We can do that again this year and I hope you join me in doing so at 7pm on May 4.

When I light my candle I will think first of Alan who was my partner who died suddenly many years ago. I will pay tribute to his kindness, his smile and laughter and his passion for standing up for others and fighting their corner. I will think of the stories shared by our bereaved community which honour the preciousness of all who have died so suddenly and what they have brought to our lives and the lives of others. I, like all in our community, want to keep the memories of who they were, and what they stood for, alive. 

By coming together with others to do this, I believe the collective lights of our candles burn with grief and some sadness but also with hope – that the deaths of those we have lost will not be in vain. That is also why the imagery we use to promote Online Epilepsy Memorial Day often features cherry blossom – it symbolises the fleeting nature of life and seasons, but also speaks of Spring, renewal and hope.

This is our seventh year of marking Online Epilepsy Memorial Day. Every time it happens it feels so special. It reminds me that though we might often feel like we’re alone when we are grieving we’re not – through our shared experiences we are part of a bigger community and we have a special voice.


Further information:

Find out more about Online Epilepsy Memorial Day 2022 and how to take part

Prevent21 Campaign - national campaign on preventing epilepsy deaths

If you want to know more about epilepsy safety and managing risks, visit our information pages, or contact us on [email protected]

If you have been affected by an epilepsy death, please contact the SUDEP Action support team on 01235 772852 or [email protected]