Thursday, May 24, 2012
Sudden Unexpected Death in Epilepsy (SUDEP) is now recognized as the leading cause of mortality associated with epilepsy, outside of status epilepticus and underlying etiologies. The general level of awareness of SUDEP has risen considerably in the last several years, but the general public is still largely unaware of just how devastating a diagnosis of epilepsy can be. In fact, not even professionals devoted much attention or research to it until the early 2000s.
Risk factors for SUDEP include the early onset of seizures, frequent generalized tonic-clonic seizures (those previously known as "grand mal"), young adult age, poor compliance with an anti-epileptic drug (AED) regimen and multiple AEDs used. Patients with epilepsy have a significantly higher rate of mortality than the general population, and SUDEP accounts for 8-17% of the deaths of people with epilepsy.
I know of seven children and young adults whose death was determined to be from SUDEP.
We can all manage our fear (and trust me, I do fear) by educating ourselves and advocating for increased research about SUDEP. In late June, Partners Against Mortality in Epilepsy is holding a conference about SUDEP in Chicago. You can read more about it here.
Now I'm going to have a swig of vodka.