On July 6, sad news from LA reached all the celebrity news columns; the young actor Cameron Boyce died unexpectedly. His family confirmed that he suffered from an ongoing medical condition, that it was epilepsy, and that the actor died after a fatal seizure.
Cameron Boyce started acting when he was nine, and one of his first major roles was with Adam Sandler in the comedy “Grown Ups” (as a “spoiled son”) in 2010. He was also known for starring in the Disney Channel movie franchise “Descendants” 1-3, the third part is to be premiered on August 2, 2019. Cameron’s co-star and friend, Sofia Carson, has shared on social media about being inconsolable.
The unfortunate turn of events for the Disney star has turned public attention to the phenomenon of “sudden unexpected death in epilepsy,” or SUDEP. It appears that it takes one of a thousand lives of the affected with this disease, and according to the official records (Centers for Disease Control and Prevention), 3.4 million Americans have epilepsy.
The special issue seems to be a veil of silence that covered the problem for many years.
Dr. Jacqueline French, a professor of neurology at NYU Langone Health Medical Center and the chief medical officer at the Epilepsy Foundation, explains that the practice has changed in the last decade. It was kept in professional medical circles mainly because it was deemed to have a negative influence on the patient’s morale. Now, the view has changed; the well-informed patients and their families have better prospects in preventing the fatal epileptic seizure from happening.
The number one measure in SUDEP prevention is taking medication as prescribed.
Sometimes this becomes challenging when the patients reach the age of leaving their parent’s home. The use of pill organizers may help with the issue, but independent living, especially in that first accommodating stage, still bears a certain risk.
The other measures that should help a great deal to prevent SUDEP from happening would be:
- avoiding the triggers, if the triggers have been determined,
- avoiding excessive consummation of alcoholic beverages,
- get training in epilepsy self-help and seizure control,
- train adults in the close environment of home and workplace to provide epileptic seizure first aid,
- get regular and sufficient night sleep.
SUDEP occurs mostly during or immediately after the seizure stops. The real cause for this burdensome risk for SUDEP with which the patients and their family are forced to live has not yet been completely determined. It has been recorded that death due to a seizure includes almost certainly an onset of apnea. Apnea is involuntary pausing of breathing, and if the interval between the breaths takes too long, the oxygen level in blood may drop critically. By Dr. French words, “their respiratory drive just goes away and never comes back.”
The aggravating factor may become an obstruction in the person’s airway, due to convulsions. That may lead to suffocation.
A less rare factor that can also lead to death in epilepsy is a dangerously irregular heart rhythm, or even a heart failure.
The combination of the factors is also one of the potential threats to the patient’s life.
The death in epilepsy-related accidents, as in car crash or drowning, are not included in SUDEP description. The saddening truth about patients that passed away from the SUDEP syndrome is that they were mostly stable and healthy apart from having epilepsy.
With the general epilepsy statistics, the average of 1 per 1000 patients are at risk of losing life to SUDEP, and with all the risk factors in mind, Dr. French points out that the ultimate goal is to prevent any seizures. If it takes specialized treatments, patients should look for them.