Beginning this week, the Epilepsy Foundation will partner with SUDEP Aware to increase education about Sudden Unexplained Death in Epilepsy (SUDEP).
SUDEP is a rare condition in which death occurs without an apparent cause, but which is presumed to be related to the person's epilepsy. Research studies have demonstrated that approximately 1 in 1,000 people with epilepsy per year die of SUDEP.
The SUDEP awareness program will work to: champion the need for more medical research; mobilize and pool resources from health care, 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 national campaign.
The kick-start for the campaign has been made possible by a grant in honor of Eric Patrick Wulchin of Boulder, Colo., who would have turned 21 on May 13. Eric's father says, "Our son died of SUDEP 2 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."
The risk factors for SUDEP include frequent generalized tonic-clonic seizures—seizures that are poorly controlled despite medication and epilepsy requiring multiple antiseizure medications. Individuals with epilepsy may reduce their risk by working with their health care 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.
More about this campaign: www.sudepaware.org/campaign.html