SUDEP Action

Making every epilepsy death count
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New SUDEP- Global Conversation online resource - an important tool for health professionals

On 5 December, 2014 we launched SUDEP - Global Conversation , a new resource to make knowledge on epilepsy deaths readily available to health professionals. The resource was launched at the Annual American Epilepsy Society Conference where it was brought to the attention of 5,000 Professionals.  The new ‘global conversation’ website 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.

The resource was made possible through a global collaboration between SUDEP Action, Epilepsy Australia and SUDEP Aware – the collaboration that helped spread the word about SUDEP world-wide producing two books in 2005 and 2011.

Rosie Panelli (SUDEP Action’s International Research Officer) and Tamzin Jeffs (SUDEP Aware) represented the collaboration at the meeting. 

Rosie Panelli commented: “We received great feedback from doctors attending the conference. A big problem for researchers is getting knowledge into the world so that it can be used. Our resource makes the body of research on SUDEP available to anyone who is interested."

"SUDEP continues to suffer from myth and misinformation, although the main myth that single seizures cannot kill has been laid to rest . What is wonderful with the new resource is that it evidences the substantial body of work on SUDEP and the hope for the future with new lines of research enquiry”.

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. 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“

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. 

For more information on how the resource works and updates visit SUDEP - Global Conversation