“Please go and enjoy your life. Danny did.”
It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures). Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.
Below are website resources offering support and information for those affected by an epilepsy related death.
UC Gardner Neuroscience Institute
Human Epilepsy Project - HEP
This is an observational study that follows folks with newly treated focal epilepsy (i.e. on anti-epileptic medication for 4 months or less) for 3 years and gathers clinical characteristics and biomarkers predictive of disease outcome, progression, and treatment response. This website is a great place to learn more: http://humanepilepsyproject.org/