What to know about SUDEP, the complication that killed Cameron Boyce

1 in 1000 people living with epilepsy are at risk
Posted at 4:45 PM, Jul 09, 2019
and last updated 2019-07-10 08:52:52-04

BUFFALO, N.Y. (WKBW) — The sudden death of Disney Channel star Cameron Boyce has brought to light a rare, yet fatal complication known as Sudden Unexpected Death in Epilepsy (SUDEP). Approximately 1 in 1000 people with epilepsy die a sudden death .

Doctors are not certain why these unexpected deaths occur, but they are most common among people who suffer from tonic-clonic seizures.

"Tonic-clonic seizure is when a person all of a sudden drops to the ground. They become unconscious and their body starts to stiffen and shake in a rhythmic pattern," informational services coordinator at Epilepsy Association of WNY Renay Moran said. "They can lose control of their bladder or bowels. Their respiration slows down and their skin turns slightly blue.

These types of seizures are uncontrolled, can trigger cardiac arrest or even death.

"Unfortunately, a lot of doctors don't tell their patients about SUDEP," Moran said. She believes this is because doctors do not want to give epilepsy patients any added stress.

"What are the chances of getting hit by a car? It's probably the same chances of having someone die of SUDEP," Moran said.

To lessen the risk of dying from SUDEP:

  • Take your medication on time
  • Get eight hours of sleep
  • Go to therapy or seizure management practices to control seizures
  • Avoid triggers

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