On July 19, 2019, a young and famous Disney star known as Cameron Boyce was found unresponsive in his apartment and later pronounced death. His family reported that he had died in his sleep at the age of 20.
An autopsy report released by the Los Angeles county department of Medical examiner-coroner declared that his death was due to a condition called “Sudden unexplained death in epilepsy”. Cameron Boyce had been diagnosed with epilepsy and was on treatment for this prior to the tragic event.
Florence Griffith is known as the fastest woman of all time because of her record-setting performances in international track and field. The world records she set in 1998 for both the 100m and 200m for women still stands. Florence Griffith was also known to suffer from epilepsy. On September 21, 1998, she died in her sleep at the age of 38.
These are just a few names of famous people whose lives have been cut short by this condition called sudden unexplained death in epilepsy. If the lives of many famous persons have been cut short by this condition, then it is certain that those of countless infamous persons have been cut short too.
What is sudden unexplained death in epilepsy (SUDEP)?
“SUDEP is the sudden unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when autopsy is found (www. epilepsy. com).” As the name tells, this condition typically affects people living with epilepsy especially those with uncontrollable seizures. October 23rd of every year is celebrated as world SUDEP action day: a day where people all over the world join their voices to raise awareness on this condition.
What happens during SUDEP?
The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. Over one-third of the time, there is a witnessed seizure or signs of a recent seizure close to the time of death. They are often found lying face down. No one is sure about the cause of death in SUDEP and it may differ between cases. Some researchers think that a seizure causes an irregular heart rhythm. Other research has shown that breathing difficulties following a seizure lead to death (Source: Epilepsy foundation).
Can SUDEP be prevented?
Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures. Research has found that people with all types of epilepsy that experience convulsive seizures can be at risk.
For most people living with epilepsy today, the disease can be controlled with available therapies and good seizure-management practices, such as avoiding seizure triggers and including the support of an epilepsy specialist.
How can you help?
By encouraging people living with epilepsy around you to take their anti-epileptic drugs regularly without skipping, avoiding those things that can provoke seizures like lack of sleep, stress, alcohol etc.
“Together let’s heal the world of people living with epilepsy, making it a better and kinder place for them to live in”
- Dr. Mundih Noelar Njohjam
CEO Epilepsy Awareness and Aid Fdtn Purple day Ambassador ILAE-Young Epilepsy Section(YES) Member of Young African leaders initiative network(YALI)