Sudden Unexplained Death of Epilepsy (SUDEP)According to the experts at Epilepsy.com, "SUDEP is sudden unexpected death in someone with epilepsy, who was otherwise well, and in whom no other cause for death can be found, despite thorough post mortem examination and blood tests. The definition excludes people dying in status epilepticus and those who drown." In October 2009, Charlotte Dravet and her colleagues hosted a conference in Verona Italy. This symposium brought together experts from around the globe to review the current state of knowledge regarding SMEI and discuss on-going and future research. The IDEA League was invited to present a poster entitled Mortality and SUDEP in Dravet Syndrome: Information from Families for Doctors. The paragraph below is excerpted from that poster: Dravet syndrome is a devastating epileptic syndrome with onset in infancy. The mortality rate is described as very high (Roger, Bureau, Dravet et al). Sudden Unexpected Death in Epilepsy (SUDEP) is a recognized syndrome where a person with epilepsy dies suddenly and no other cause of death is revealed. In the general population of people with epilepsy the risk of SUDEP is on the order of 1:1000 per year. In children with Dravet syndrome the incidence of SUDEP appears much higher than this and the need for greater understanding about the reason for this is urgently needed. The high incidence of SUDEP in recent years on our Family Network, 10 cases since 2006, has further increased anxiety of parents and highlighted a desperate need for both research into SUDEP in Dravet syndrome and open discussion between doctors and families. According to estimates in the medical literature, the mortality rate for Dravet syndrome is approximately 15%. In an attempt to help researchers better understand Dravet syndrome and SUDEP, the IDEA League is working with scientists to develop a tissue bank. Several families have already generously donated DNA and tissue samples which are preserved for future research in the hopes that the tragic loss of their child will, in some way, help prevent similar suffering for families in the future. This page is dedicated to the memory of every patient with SMEI or a related disorder who has passed away from SUDEP or status epilepticus. You Shall Not Be Forgotten
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