SUDEP Action

Making every epilepsy death count
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Charity's SUDEP Awareness Day campaign to shine a spotlight on risk in epilepsy

SUDEP Action’s second annual SUDEP Awareness Day on 23rd October, is set to help shine a spotlight on risk in epilepsy. The campaign is dedicated to raising awareness of Sudden Unexpected Death in Epilepsy (SUDEP) all around the world. The awareness day, which now has a microsite was launched by SUDEP Action last year.
Using the theme ‘Are You SUDEP Savvy? The campaign is encouraging people with epilepsy to learn about SUDEP, their individual risk and ways in which they can manage their condition in order to reduce their risk. The awareness day aims to highlight the need for more research into SUDEP to help save lives. It also honours the lives of all those who have died from the condition. 

Laura Marsden, 26, from Swindon, who is supporting the awareness day campaign, was first diagnosed with epilepsy at 19. She says: “I first heard about SUDEP from my neurologist around 18 months ago. And to be honest, it was a real eye opener as to how serious my condition can be. I didn't really take my epilepsy too seriously before that as I didn't want to let it affect my life more than it had already. I still live by this but I'm more cautious around the house and at night.”

Charity Chief Executive Jane Hanna OBE has been campaigning for SUDEP Awareness for more than 20 years. Jane highlighted the awareness day key messages saying:  
“If you have epilepsy, we would like you to know that there are things you can do to reduce your risk of SUDEP, such as taking your medication regularly and reliably and making sure you have regular reviews. Not everyone with epilepsy is at risk, it is important you discuss your risk with your health professionals.” 

We are also encouraging health professionals to talk to their patients about SUDEP and epilepsy risks; this can be done positively with the right information. Having the SUDEP conversation with your patients can help them make informed lifestyle choices and help them take steps to reducing their risks.

Working with epilepsy organisations from the USA, Europe and Australia and with our partners on SUDEP –the Global Conversation, we have put together some great awareness materials and they are available for download for free on the campaign site

Epilepsy claims around 1,200 lives in the UK every year, at least 600 of these through SUDEP. Research shows that about 42% of these deaths may be preventable through better management of known risk factors.  There are around 600,000 people with epilepsy in the UK. About 87 people are diagnosed with the condition every day. Epilepsy carries a risk of death of about two to three times higher than the general population.  In the UK it is the fifth highest contributor to premature death in men, and eighth in women, and it is most common in young adults.
SUDEP Action and charity supporters will be working hard across the UK & beyond to raise awareness and funds for the charity on the day. 

The charity was the first organisation in the UK and internationally to champion the SUDEP cause and is the leading organisation worldwide on this issue. For more information on how you can get involved visit