As a volunteer Befriender with Epilepsy Connections I know that the organisation takes awareness of SUDEP (Sudden Unexpected Death In Epilepsy) very seriously. It is a difficult and challenging topic, which requires “the conversation” and the knowledge to be shared at a carefully chosen moment. Today is SUDEP Action Day. A day which is essential to heighten individuals knowledge regarding SUDEP, and for some an opportunity to remember someone lost to SUDEP. Knowledge is power.
What is SUDEP?
SUDEP is sudden unexpected death in epilepsy, this is when a person with epilepsy dies very suddenlt and no other cause of death is found. We do not yet know the reason why SUDEP happens. It is highly unlikely that there is a single cause, but a combination of factors. (which highlights the importance of conversations and knowledge around risk factors).
Nevertheless, we are aware of the general risk factors:
· Young adults (early age of epilepsy onset, before 16 years of age)
· Nocturnal Seizures
· Early age of seizures
· Poor compliance with epilepsy treatments
· Longer duration of epilepsy
· Symptomatic epilepsy
· Male Gender
Yet the risk factors only tell a very small part of the tale. Sometimes individuals with infrequent seizures pass away, while other individuals with more frequent and evidently much severe seizures do not. Several may be more at risk due to their social behaviour and lifestyle. It is a very complex picture.
Individuals with epilepsy can take a very confident and serious approach by moderating their chances of SUDEP by making sure their general health and seizure independence is always put first. Good management of your seizures can be accomplished purely by having recurring appointments with your Epilepsy Neurologist and Specialist Nurse team. Decreasing the amount of your regular alcohol intake is a sensible idea as heavy drinking makes an individual more vulnerable to seizure activity around 6 to 48hrs after alcohol consumption. Taking your prescribed medication at it’s proper dose on a regular basis will decrease your chances. The importance of compliance with medication cannot be emphasised enough.
It is commonly known that uncontrolled seizure frequency is an element powerfully associated with an increased risk of SUDEP .
Life is amazing, short, special and precious, we should all live it to the full while we can as we don’t know that moment where it may be grabbed from underneath us.
Though I want to stress strongly that the risk of SUDEP is low, all elements that may lead to injury, damage, harm and hurt or loss of life should be implemented, there is much we can proactively do together to increase awareness and understanding of the risk factors.
The research goes on…in the meantime we must continue talking to each other and sharing experiences.