Today is International SUDEP Action Day.
Sudden Unexpected Death in Epilepsy (SUDEP) occurs when a person with epilepsy dies
suddenly and prematurely – and no other cause of death is found.
Each year, more than 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP.
It is the ‘cause’ of around half of all epilepsy-related deaths with the remaining 50% related
to drowning, accidents, status epilepticus (a continuous seizure lasting more than 30
minutes), or suicide.
Epilepsy Tasmania ambassador, Shaun Smith, sadly has a personal story of SUDEP:
“(When my wife, Tamieka, was diagnosed with epilepsy) we didn’t consider the potential
for SUDEP. We didn’t really know much about it… but it happened.”
“The loss of my wife, and the mother of our two young daughters, Lily and Harper, was
shocking, devastating, unbelievable, unfair…”
“Our hope, as a family, is that we can inspire optimism and a positive outlook for those
affected by epilepsy by continuing to raise awareness of epilepsy itself and the supports
available to the broader Tasmanian community.”
People with poorly controlled seizures are at a greater risk of dying from SUDEP, but we
don’t yet know what causes it. SUDEP occurs most often at night or during sleep when the
death is not witnessed, leaving many questions unanswered. Current research into the
possible causes of SUDEP focuses on problems with breathing, heart rhythm and brain
function that occur with a seizure. More funded research is needed.
Epilepsy Tasmania CEO, Wendy Groot, said “While there is much we don’t know about
SUDEP, there are things that can be done to reduce the risks for people with epilepsy.”
“The most important known way to lessen the risk of SUDEP is for people with epilepsy to try
to ensure they have as few seizures as possible (particularly Generalised Tonic Clonic
“This can include taking prescribed seizure medications consistently, identifying and
avoiding seizure triggers, keeping regular appointments with your doctors and considering
other epilepsy treatments, such as surgery, when medications are not working to control
seizures,” said Ms Groot.