Epilepsy affects approximately 250,000 Australians, and yet very few people are aware that people with epilepsy are at risk of Sudden Unexpected Death (SUDEP) from Epilepsy.
What is SUDEP?
SUDEP is when a person with epilepsy dies suddenly and prematurely and no reason for death is found. SUDEP is most likely to occur in people who have frequent tonic-clonic (convulsive) seizures, especially at night.
The cause of SUDEP is not yet known. More research needs to be done to find out the exact cause, but so far experts believe that the regularity and severity of seizures can alter a person's heartbeat or breathing.
Approximately 1 in 1000 people living with epilepsy pass away from SUDEP; and unfortunately for many, it's only learned about after losing a lost one to SUDEP.
Simone Zia, who had to say goodbye to her sister, Nicole, in 2010, had no idea.
“After Nicole died, I spoke to her doctors and he said it might have been something called SUDEP and I thought, ‘what on Earth is that’?”
“Knowledge is power. And if our family had known about SUDEP, then it could have made a huge difference in how we lived our lives, and even if Nicole still died, then at least we wouldn’t have had a catastrophic and debilitating shock.”
To learn more about this silent but tragic condition, please visit the Epilepsy Action Website here.
This post was written by Epilepsy Action Australia. As the leading provider of epilepsy support and information nationwide, Epilepsy Action Australia is there to provide the very best answers, care, and support to all those affected by this devastating disease.