Individuals who have uncontrolled seizures are at heightened risk for SUDEP.
One in 26 Americans will develop epilepsy over the course of a life leading to almost three million Americans now living with epilepsy. For almost one third of them, their seizures are uncontrolled by medicine and other common types of treatment. Individuals who have uncontrolled seizures are at heightened danger of Sudden Unexpected Death in Epilepsy (SUDEP), which takes more lives per annum in America than fires and sudden infant death syndrome (SIDS) joined.
To address SUDEP, epilepsy specialists, people who have epilepsy, bereaved families and advocacy organizations have come together for the Partners Against Mortality in Epilepsy (PAME) Seminar — a four-day educational event dedicated predominately to SUDEP. This meeting intends to cultivate knowledge, heighten awareness and to hasten activity around epilepsy mortality. Top researchers from all over the world will soon be presenting the most recent discoveries and findings on SUDEP and discussing the most recent developments in devices and treatments to stop epilepsy mortality.
“There’s an increasing demand for communications between researchers, clinicians, families as well as the general public to be able to recognize strategies that might be helpful to any or all individuals involved in caring for someone with epilepsy,” said Elson So, president, American Epilepsy Society. “The aim of the seminar will be to develop cross fertilization of advice so that clinical interactions can be better educated by patients and families and so that clinicians can better understand risk factors and involve families in timely discussion of these threats.”