08-12-2014 | Families, researchers, clinicians and organisations unite to promote a global conversation on SUDEP

'08-12-2014 | Families, researchers, clinicians and organisations unite to promote a global conversation on SUDEP' image

A global collaboration of charities, researchers and families has created a unique online knowledge resource on sudden deaths in epilepsy. The new web-based 'Global Conversation' combats the myth that seizures do not kill.

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.

Jane Hanna, one of the editors, who has campaigned for awareness and action on epilepsy deaths since her partner died suddenly in his sleep aged 27 in 1990 said: "The mortality burden of SUDEP alone is high, second only to stroke amongst all neurological disorders because so many of the sudden deaths are in young people. 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, a collaboration between SUDEP Action, Epilepsy Australia and Canada's SUDEP Aware combines the latest research by international experts with powerful accounts of bereaved families making it easily accessible to anyone in the world.

It follows the success of two books that were produced by the partnership with more than 16,000 copies distributed to epilepsy communities around the world at international conferences held in Paris, Rome, Chicago, Montreal, London, Glasgow, Singapore and India between 2005 and 2014.

In 2013 SUDEP Action launched a Call for Openness on SUDEP which is supported by the International League Against Epilepsy (ILAE); the International Bureau for Epilepsy (IBE) and 13 other epilepsy organisations around the world including Epilepsy Ireland. For more, see https://www.sudep.org/call-openness-campaign.

Follow the SUDEP Global Conversation on Facebook.

See also: The Epilepsy Deaths Register for Ireland