SUDEP and how the death of Cameron Boyce is raising awareness

In July 2019, young actor, Cameron Boyce tragically died in his sleep as a result of SUDEP (Sudden Unexplained Death in Epilepsy). Cameron was known for his roles in a number of Hollywood films and TV shows, including Grown Ups, Descendants and Jessie. 

Of course, within the epilepsy community SUDEP is not new. However, the reaction to Cameron’s death highlighted the fact that inside and outside of this community, people are not aware of SUDEP and the potential danger it poses to people with epilepsy. Despite the fact that SUDEP is estimated to occur as frequently as 1 in 4,500 children and 1 in 1,000 adults. Many people could not understand how a seemingly healthy young man could die so suddenly in his sleep with no explanation as to how it happened. 

Google Trends information shows that Google searches for the term ‘SUDEP’ increased exponentially as the news came to light that Cameron had passed away. This demonstrates that people were taking to the internet to learn about this previously unfamiliar term. 

Seizure detection devices could help

Although tragic, it’s crucial that the passing of Cameron Boyce can highlight the need for increased awareness, not only outside of the epilepsy community but also within it. Seizures during sleep can go unnoticed, but there are still many people with epilepsy who do not take precautions with the use of seizure detection devices. These devices may identify seizures during sleep and alert others in the area to provide urgent aid. 

Many of these devices are in the early stages of development, although some have been shown to be effective in a number of situations. There have been reports of false positives and oversensitivity leading to “alarm fatigue” as people are woken up without cause. Many people question the overall effectiveness, however, it’s clear that the advancement of these technologies is a way for in the hope of avoiding tragic deaths, such as Cameron’s. 

SUDEP is rare, which can lead to complacency as many people with epilepsy, as well as parents and carers, may believe it is unlikely to affect them. However, the death of Cameron Boyce may have served to highlight SUDEP at the forefront of the wider epilepsy community, a legacy that may help to save lives in the future. 

Cameron’s mother was quoted as saying “if I ever thought he could die from a seizure I never would have let him out of my sight”, a feeling that will be shared by many parents and relatives who have someone in their life with epilepsy. This is a natural thought, however, it’s crucial that the increased awareness is used positively to help drive funding and new technologies to prevent SUDEP within the future.  

For more information on SUDEP, you can find some here on the SUDEP Action website. 

National Epilepsy Training can help

For more information on SUDEP, as well as advice and guidance on how to safeguard a person with epilepsy effectively, please feel free to get in touch. Call us on 01706 373075 or email admin@nationalepilepsytraining.co.uk.