As those with epilepsy know only too well, there are a lot of misconceptions about the condition. One of them is epilepsy does not lead to death.
Unfortunately, one tragic consequence of epilepsy can be SUDEP – Sudden Unexpected Death in Epilepsy, which is estimated to be responsible for a devastating 150 epilepsy-related deaths each year in Australia.
SUDEP occurs when a person with epilepsy dies suddenly and prematurely and no other reason for their death is found. Much more research is needed and a lot more needs to be done to educate those with or affected by epilepsy on the risks involved and the recommended steps to take to minimise them.
Today is SUDEP Action Day (October 23), and I am very pleased to announce that, Epilepsy Action Australia has joined forces with leading international organisation SUDEP Action (UK) to drive awareness of this often overlooked issue.
I am confident that this new powerful and exclusive partnership with SUDEP Action will lead to more research, awareness and most importantly more lives being saved.
By combining our strengths we will ensure people have the most recent and reliable information and advice, and it will allow us to extend our reach to more healthcare professionals and families across Australia.
This year’s SUDEP Action Day theme is appropriately ‘Why’: ‘Why don’t more people know about SUDEP?’; ‘Why is talking about SUDEP important?’; and ‘Why do people with epilepsy need to know about the risks and the precautions they can take?’.
To those questions, I would add: ”Why did it happen?” – the question I have heard from many distraught families over the years who have lost a loved one to SUDEP. They have pondered that very question over and over, wondering if they could have prevented it, if they had only known SUDEP existed.
Our new collaborative partnership with SUDEP Action will help us further provide the best possible care and support for bereaved families.
In addition, we are committed to supporting increased research to find out the exact cause of the fatalities, which affects around 1 per 1000 people with epilepsy. An exact cause is unknown. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart. Risk varies from person to person so it is important for people to learn about their own epilepsy and work actively with their healthcare professionals to minimise the number of seizures.
This SUDEP Action Day, I urge you to find out as much as you can about SUDEP by reading some of Epilepsy Action’s more detailed information here and then contact your doctor if you have any concerns about you or your family member’s medication and seizure control.
If you would like to become involved in helping promoting awareness, the official SUDEP Action Day page has a wealth of ideas including changing your social media covers or publicly displaying some of the great informational posters available to download.
SUDEP Action Day provides an opportunity for us to truly ‘take action’ on openly discussing SUDEP, and also for us to take a moment to consider the families of those who have lost someone as a result of epilepsy.