My Story is an important and powerful way for you to join our campaign in tackling epilepsy deaths.
Campaigning for change
Knowing the numbers of people who have died from epilepsy is vital, and we worry these numbers are increasing. But numbers don’t tell us the full story about the human impact, tragedy and devastation of when a person dies unexpectedly.
MPs and media are more recently asking for stories of those that have died during the pandemic in order to highlight epilepsy deaths.
Every story regardless of when it happened is precious to us and deserves to be told.
Sharing your story with us can make a real difference to others. Your experience has the power to make an impact and help SUDEP Action to break down barriers for change. If you think this is something you can help us with, we would be incredibly grateful to hear from you.
Epilepsy Deaths Register
With your permission we can use your stories alongside our research and the information compiled from over 500 reports to The Epilepsy Deaths Register, to help people to try and understand the experiences of families.
Our voices are stronger together and as the only charity solely dedicated to supporting and working with the bereaved to make change, we are calling on people to share their story too. With your help we are able to shout louder, we can and will always represent your views, we provide services that the bereaved have asked for.
If you would like to share your story and be part of our ‘voice’ please contact our team on [email protected]
SUDEP Global Conversation
If you live outside the UK, you may be able to share your story via our international project with Epilepsy Australia and SUDEP Aware Canada.
(Please note that it may take some time to upload your stories, and we may need to contact you again prior to publishing)
The stories are those of people who have died from epilepsy, whatever the cause.
With permission we share these stories where they will have most impact in highlighting epilepsy mortality.
If you have any questions at all, please do contact us on [email protected] or 01235 772850