SUDEP Awareness Day

What is SUDEP?

SUDEP stands for Sudden Unexpected Death in Epilepsy – something that affects many families across the world. Alarmingly, three people in the UK die from epilepsy-related causes every day. SUDEP Awareness Day aims to raise understanding of this issue and help prevent such tragic occurrences.

“Our Risk, Our Rights”

This year, SUDEP Action Day is set to take place on October 15th, with the theme “Our Risk, Our Rights.” This theme has been chosen to highlight the need for individuals and families impacted by epilepsy to have access to vital, life-saving information regarding epilepsy.

A case study involving practising neurologists in the UK used a questionnaire to explore when and why they talked about SUDEP with their patients. The findings showed that only a small percentage (5%) of neurologists addressed SUDEP with all of their patients. Most participants felt that informing patients about SUDEP did not help the patient to avoid risk factors, and that it could cause them anxiety.

However, information is essential for individuals with epilepsy. Without a clear understanding of their condition, they cannot make informed choices about managing it effectively and minimising potential risks.

Although not everyone is at risk for SUDEP, by understanding it, you can better help individuals with epilepsy, easing some of the fear and anxiety associated with the condition. There are many ways to get involved in SUDEP Day, from baking cakes to simply sharing a post on social media. You can find out more in our blog, SUDEP Action Day: How You Can Make a Difference.

Technology To Help Prevent SUDEP

Technology is now also playing a part in helping people with epilepsy get the help they need quicker than before, wherever they are at the time of a seizure.

Many SUDEP deaths occur overnight, making them difficult to observe, which likely contributes to the lack of understanding of SUDEP. With the aid of technology, however, you can take better control of epilepsy at night. The Nightwatch+ is designed to detect severe seizures that happen overnight. This comfortable, wireless sensor is worn on the upper arm and continuously tracks heart rate, movement, and body position during sleep.

When a potentially dangerous seizure is detected, the sensor wirelessly transmits an immediate alert to a separate alarm unit, notifying caregivers. This enables timely intervention, which could potentially prevent SUDEP. This is a great option for parents, caregivers, and anybody worried about the risk of SUDEP.

Another device to consider is the Epi-Care mobile, which is particularly beneficial for young people with epilepsy. This device allows them to enjoy their social lives while keeping their loved ones informed if they have a seizure. The Epi-Care mobile is a wristwatch-style alarm that can detect serious seizures known as tonic-clonic seizures. It comes with a smartphone that works together with the watch.

When a seizure happens, the device sends alerts to selected contacts through an app that’s already installed. This way, friends or family members with a mobile phone can be notified immediately, ensuring support is on the way.

At Epilepsy Alarms, we are dedicated to helping families and caregivers manage epilepsy with confidence. Our team brings years of experience in seizure detection technology, and we’re committed to guiding you toward the right solution at every step. You can find all these devices available on our website. If you’re interested, we can also send you a free information pack.

Useful Links: 

SUDEP Action: https://www.sudep.org/ Tel: 01235 772850