Welcome to the
   
SUDEP global conversation

For many years it has been known that people with epilepsy can die suddenly and unexpectedly - a phenomenon now known by the term SUDEP. 

The latest contribution to the global discussion, Sudden Unexpected Death in Epilepsy: continuing the global conversation was launched on the 29th August 2011 at the 29th International Epilepsy Congress, Rome. This is a free publication in the interest of community awareness and understanding.


Background

In 2005 Epilepsy Australia partnered with Epilepsy Bereaved to publish the first edition of Sudden Unexpected Death in Epilepsy: a global conversation. Collective experience indicated that there was a need for a resource that presented a succinct picture of SUDEP; one that combined science with the human experience in an accessible style for all interested readers. The book proved to be a resource of value to both health professionals and the general community, and prompted gratifying international endorsement.

Many SUDEP questions have not yet been answered and global debate continues. The need for clear and concise information on this topic is ongoing, prompting us to ‘continue the conversation’ in 2011 with a second book, Sudden Unexpected Death in Epilepsy: continuing the global conversation. The editorial partnership has been strengthened with SUDEP Aware (Canada) joining Epilepsy Australia and Epilepsy Bereaved (UK), and by the International Bureau for Epilepsy endorsing and supporting the publication as part of its golden jubilee celebrations.

Although causes remain elusive, evidence supports SUDEP risk reduction strategies. Health policy changes reflect some growth in the understanding of epilepsy-related death, and there has also been a small increase in community awareness. However, deaths still occur in families with no knowledge that such a tragedy can occur bringing not only grief but also endless regret that knowledge might have prevented the death.

This latest edition is a collection of considered observations by leading experts in their field of science, medicine, law, communication, and epilepsy advocacy.  All gave of their time and expertise freely.

"This volume, six years after the first edition of Sudden Unexpected Death in Epilepsy: a global conversation was introduced, brings the field forward in leaps and bounds." Solomon L. Moshe, President, International League Against Epilepsy.

Sixteen bereaved families have honoured us with contributions. Their stories offer insights into lives lived with epilepsy, the search for quality care, and the challenges of balancing the risks of epilepsy against quality of life. Their stories are a tribute to their loved ones and we thank them for their faith in this book.

"This new edition of the 'global conversation' is a welcome resource to assist in the challenge to reduce epilepsy deaths". Mike Glynn, President, International Bureau for Epilepsy.

Epilepsy Australia, Epilepsy Bereaved, SUDEP Aware and the International Bureau for Epilepsy (IBE) have collaborated to freely distribute these publications as a community awareness project.

The full text can be downloaded in pdf by clicking on the images on the right.

Hard copies of the 2011 book are now available from Epilepsy Australia, Epilepsy Bereaved and SUDEP Aware. Please contact the organisation in your region to obtain a copy - a small p&h fee will apply.

Our commitment to the global conversation will not end with this publication. The discussion and debate will continue here with updates on new research as it is published, changes in public policies as they are announced, and communication resources as they are developed.

Keep up to date on the latest on SUDEP and bookmark this page!

 

 

 

Sudden Unexpected Death in Epilepsy: a global conversation