New Campaign to Shed Light on Epilepsy’s Dark Secret

Awareness Campaign Champions More Research and More Action to Address Little-Known Problem

TORONTO, May 13 - People with epilepsy can die suddenly and without warning.  Families and friends are left in shock, with anger and frustration, searching for answers.  Why don’t we know more about this?  Could we have done something to prevent this tragedy?  How can we stop another unnecessary death?

Beginning today, the commitment is there to find some answers - through the launch of a SUDEP awareness campaign.

"Sudden Unexplained Death in Epilepsy (SUDEP) needs to be a higher priority for research and for public education," says Dr Elizabeth Donner, a leading expert on SUDEP at The Hospital for Sick Children (SickKids) in Toronto, a world-renowned pediatric facility.  She is also an Associate Professor of Pediatrics at the University of Toronto and co-founder of SUDEP Aware.  "We need to attack the challenges head on."

“SUDEP is a real issue that needs to be discussed between physicians and their patients,” says Donner.  “Even more importantly, these patients should be offered counselling about how to reduce the risk of SUDEP.  By opening the lines of communication, families and physicians can work together in addressing this real medical concern.”

The SUDEP awareness program will work to: champion the need for more medical research; mobilize and pool resources from healthcare, academic and advocacy groups; encourage increased discussion and promotion of SUDEP knowledge; and generate action from professionals and the lay public in support of this North America-wide campaign.

One in 100 people 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 SUDEP. 

The risk factors for SUDEP include frequent generalized tonic-clonic (grand mal) seizures, seizures that are poorly controlled despite medication and epilepsy requiring multiple anti-seizure medications.  Individuals with epilepsy may reduce their risk by working with their healthcare team to have as few seizures as possible.  For some people this could mean adjusting medications or lifestyle factors, for others it could mean exploring different avenues of treatment, such as surgery.
 

The kick-start for the campaign has been made possible by a grant in honour of Eric Patrick Wulchin late of Boulder, Colorado, who would have turned 21 today.  Eric's dad says,"Our son died of SUDEP two years ago, at age 19.  Sadly, only after his death did we learn of SUDEP.  That's not acceptable.  From here on patients, their families and advocacy groups have to work to force the issue.  My wife, Eric’s brother and I are deeply appreciative of the fact that others are now rallying behind making SUDEP a public priority."

“In the coming months, we will be bringing together like-minded organizations, individuals and businesses to help build out this campaign into a major, multi-dimensional and sustained effort to advance our knowledge and to equip the healthcare frontlines with tools to enable us to reduce these unnecessary deaths from SUDEP in the years ahead”, says Donner.  “Increasing awareness is the first critical step to improving our understanding of this devastating condition.  From knowledge comes the potential for life-saving action.”