Families, researchers, clinicians and organisations unite to promote a global conversation on sudden death in epilepsy
A global collaboration between SUDEP Action, Epilepsy Australia and SUDEP Aware has created a unique online knowledge resource on sudden deaths in epilepsy (SUDEP). SUDEP – the Global Conversation aims to combat the myth that seizures do not kill and make knowledge available to tackle epilepsy deaths.
Jane Hanna, CEO SUDEP Action who led the creation of the new resource said: “If you read the family stories on the site it will bring home that a major barrier to preventing deaths is a gap in knowledge and understanding about epilepsy deaths. If you read the fact, challenge and action sections you will see there is a substantial body of evidence that can be used today. We need research but we also need to look at how we spread and use the knowledge of what we know now. This resource can be used by anyone and is part of the solution”
Sudden Unexpected Death in Epilepsy (SUDEP) is when a person who has epilepsy dies suddenly and unexpectedly, with no other cause of death established. It accounts for the majority of deaths in people with chronic epilepsy. Deaths are also caused by accidents, status epilepticus, and suicide.
Rosie Panelli, Part-time international research officer at SUDEP Action and one of the co-editors said:“Most people with epilepsy will live a full and normal life but we need to acknowledge the risks, especially with convulsive and night-time seizures. There are simple measures that can be taken that are known to reduce risk that people may want to know and try“
The new ‘global conversation’ website www.sudepglobalconversation.com combines the latest research by international experts with the journeys of bereaved families, researchers, clinicians and organisations to bring the facts to light so that deaths can be tackled.
SUDEP – the Global Conversation will also be promoted at an exhibition at the American Epilepsy Society Meeting in Seattle between 6 -8 December, 2014 which will be attended by about 4000 doctors and nurses from the UK and world-wide.
For more information on how the resource works and updates