SUDEP Action

Making every epilepsy death count
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My Story

My Story - is an important and powerful way for you to join our campaign. As ‘the voice of the bereaved’ for over 20 years, we use information shared with us to good purpose. We are very experienced in supporting those who wish to share their stories and who find it helpful to know that they are part of the ‘voice.’ 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.

The stories in this section are from the UK and are used to help us to influence change and to reduce unnecessary deaths from epilepsy. They also help people feel less alone, knowing that others have walked a similar path.  

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] 

Please note that it may take some time to upload your stories and we may need to contact you again, prior to publishing.  

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:  

View the stories

Register a death

Register a death

Register a Death
Go to memorials
Create a memorial

Telephone counselling

Telephone counselling

Telephone counselling