visit the global conversation website
The official book launch of Sudden Unexpected Death in Epilepsy – continuing the global conversation was announced at the 29th International Epilepsy Congress meeting in Rome, August 29th.
The book blends case studies with scientific advances to bring the issue of sudden unexpected death in epilepsy to the forefront because by learning more, we can do more.
The launch has come in the week after the publication of a major inquiry into the deaths of two Scots teenagers. They both died of SUDEP. Neither they nor their families knew about the risk of SUDEP.
Sheriff Duff’s recommendations included that ‘The vast majority of patients with epilepsy, or their parents or carers where appropriate, should be advised of the risk of SUDEP’. More on the Fatal Accident Inquiry
One in 100 people worldwide have epilepsy, the neurological condition characterized by recurrent seizures.
Research studies have demonstrated that approximately 1 in 1000 people with epilepsy per year die of sudden unexpected death in epilepsy, or SUDEP.
The causes remain elusive, but identified risk factors include frequent generalized tonic-clonic (grand mal) seizures, seizures that are poorly controlled despite medication and epilepsy requiring multiple anti-seizure medications.
People with epilepsy may reduce their risk by working with their healthcare team to have as few seizures as possible. For some this could mean adjusting medications or lifestyle factors, for others it could mean exploring different avenues of treatment, such as surgery.
Written for anyone with an interest in epilepsy, Sudden Unexpected Death in Epilepsy – continuing the global conversation is a SUDEP digest, presenting a current picture of SUDEP from perspectives both scientific and humane.
The collection of articles details current understanding from an array of unique perspectives, provides insight through the sharing of personal stories and explains the challenges of SUDEP around the globe.
“This is a welcome resource to assist in the challenge to reduce epilepsy deaths”, says Mike Glynn, President International Bureau for Epilepsy.
Leading SUDEP authors in the medical, legal and health professional fields and 16 families affected by SUDEP generously contributed their time and expertise towards this project. The long-term goal for highlighting SUDEP is to further scientific research, to help better understand the causes and to, ultimately, prevent these unexpected deaths.
Many SUDEP questions have yet to be answered, but the global debate continues in this book, a follow-up to the 2005 publication Sudden Unexpected Death in Epilepsy: a global conversation. The editorial partnership has been further 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.
“This volume, six years after the first edition of Sudden Unexpected Death in Epilepsy: a global conversation was introduced, brings the field forward by leaps and bounds”, Solomon L. Moshe MD, President, International League Against Epilepsy.
In the struggle to increase awareness and improve understanding of SUDEP, such a concise source of information for both professionals and the general community is invaluable.
Visit the following website for updates as the global conversation about SUDEP continues: www.sudepglobalconversation.com
The full text can be downloaded from the website and copies of the book can be ordered in the UK info@eb-team.org.uk 01235772850
