SUDEP Action

Making every epilepsy death count
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Why we’re supporting National Epilepsy Week, May 23-29

It’s National Epilepsy Week from May 23–29, and the leading epilepsy charities will be joining forces to raise awareness of the condition. SUDEP Action will be sharing information on behalf of those affected by epilepsy, including what epilepsy is and what can be done to reduce risks and better manage the condition. The theme of this year’s campaign is #EpilepsyTogether

Over half-a-million people in the UK have epilepsy but the effects of the condition go much wider. Around every person living with epilepsy there is a support network of friends, family, teachers, work colleagues and healthcare teams who make a difference on a daily basis.

For SUDEP Action, National Epilepsy Week is an opportunity to help people with epilepsy find out more about living safely and knowledgeably. Learning more about the risks, gaining a greater understanding of what SUDEP is, and using tools such as our Checklist  and EpSMon app are all positive steps towards taking control and living well.

About epilepsy

  • Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages.
  • Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.
  • It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated.
  • The risk of premature death in people with epilepsy is up to three times higher than for the general population.
  • At least 21 people die from an epilepsy death each week in the UK and many of these deaths are preventable.
  • Because of SUDEP Action funded research we know that epilepsy-related deaths rose by 69% in the years before the Covid-19 pandemic and doubled in pregnant women with epilepsy.

At SUDEP Action our focus is on changing perceptions, attitudes, cultures and actions – which is why we’re supporting National Epilepsy Week this month. Also involved with the campaign are: Epilepsy Action; Young Epilepsy; Epilepsy Society; Epilepsy Research UK; Epilepsy Ireland; Epilepsy Connections; Matthew’s Friends; OACS and Roald Dahl’s Marvellous Children’s Charity.

By tackling #EpilepsyTogether we can, and will, save lives.


Who are the people that have made a difference on your epilepsy journey?  

Let us know via our social media platforms below and join in the National Epilepsy Week conversations, to share experiences and show others what living with epilepsy is really like.

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