Why is SUDEP Action Day important?

Epilepsy, like other long-term conditions such as Asthma or Diabetes, comes with certain risks. If left unchecked these can become very serious; so, knowing about them, and understanding how to reduce them where you can, is important.

There are over 1,000 epilepsy-related deaths each year in the UK alone – but this figure is likely to be underestimated. Around 50% of these deaths are due to Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is when a person with epilepsy dies suddenly and prematurely and no other reason for death is found.

SUDEP Action Day is a special day which brings organisations and people together to raise awareness of SUDEP worldwide. Launched on 23 October 2014 (as SUDEP Awareness Day), by SUDEP Action, it shines a light on the largest cause of death in people with epilepsy.

We don’t know what causes SUDEP to happen, or who will be affected.
But researchers have identified key risk factors that can increase risk of SUDEP – and in some cases, there are positive things that can be done to reduce risks.

We know that 42% of all epilepsy deaths are potentially avoidable, so it is vital people with the condition know how to reduce their risks.

“Making sure people with epilepsy know about their risks and how to live safely is incredibly important. There are many things which can be done to reduce risks – but the first step is knowing they exist and taking steps to tackle them where possible. This is why SUDEP Action Day brings together people and organisations from across the world to raise awareness about SUDEP, to help people live well with epilepsy and hopefully to save lives.” Samantha Ashby, Deputy CEO, SUDEP Action.

Risk levels vary between people with epilepsy, and they can change over time; it is important that people with epilepsy discuss risks regularly with their clinician, who can then help assess the risks and put steps in place to reduce them.

Lifestyle and treatment choices are important. For example, you could be in a high-risk group but may have options to reduce that risk, e.g. successful epilepsy surgery. Or you may be at low risk, but your treatment or lifestyle choices put you at greater risk, e.g. deciding to stop medication against advice, or drinking alcohol to excess.

Information and resources are provided to help keep people with epilepsy safe and enable better discussions with their clinician.

To help with these discussions, SUDEP Action has created two free and award-winning tools:

SUDEP & Seizure Safety Checklist – a five-minute checklist for clinicians to use with their patients to support risk discussions and help monitor their epilepsy risks. Over 625 UK clinicians already use it.

EpSMon – an app, that enables people with epilepsy self-manage their condition between appointments. Now with over 4,500 users, it’s available to download via the Apple or Google Play app stores.

Finding out more information about epilepsy, the risks (such as SUDEP), managing and talking about it, help to balance risk and help a person to live well with epilepsy.

If you have been bereaved by epilepsy or would like more information about how to reduce epilepsy risks, visit: www.sudep.org or call 01235 772850.

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