SUDEP Action

Making every epilepsy death count
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SUDEP Awareness Day

Follow this link for the SUDEP Awareness Day 2016 page

We launched SUDEP Awareness Day on 23 October 2014 as part of our Call for Openness Campaign. It is a special day dedicated to raising awareness of SUDEP. On the day we encouraged people to host a variety of events to raise awareness of SUDEP and promoted ways that people with epilepsy can reduce their risk. We also commemorated all those who have died. The day was also an opportunity to raise funds for SUDEP research.

Support from Organisations

MPs support SUDEP Awareness Day

On the day, we encouraged people to read our Be smart, be safe leaflet to learn about ways they can reduce their risk with the following key messages:

The risk of SUDEP is low and varies from person to person. Your type of seizures may not be associated with SUDEP so you need to talk to your doctor in order to understand your risk. If SUDEP is a risk, you may want to consider it as part of your care plan. Your doctor can advise you on what choices you may have to help reduce your risk.

It is important that you look after yourself and do all that you can to minimise your risk by obtaining seizure freedom where possible. Work with your healthcare team to have as few seizures as possible. Anti-epileptic medication will fully control seizures in 70% of people and surgery can help around 3% of those whose seizures are drug resistant. For others it could also mean adjusting medications or lifestyle factors.

We shared the 'Be smart, be safe' tips listed below:

  • Report any changes in your seizures
  • Moderate your intake of alcohol
  • If you are making lifestyle changes such as having a baby or going to university then please discuss them with your doctor
  • Keep a seizure diary to help you avoid triggers for your seizures
  • Consider using an alarm if you have night time seizures.
  • Take medication regularly as prescribed
  • Talk to your doctor before making changes to your medication
  • Think twice before using recreational drugs
  • Make sure you have an annual review

We also shared ideas of how people could help raise awareness and funds on the day:

  • Hold an information stall and give out information about SUDEP
  • Take our SUDEP Action leaflets to your GP
  • Cake sale - make orange cakes for sale
  • Organise a 'wear orange to work day' or run a cake stall
  • Sale SUDEP Action cards, T/shirts, Car Stickers, badges and bags
  • Hold a tombola
  • Organise a tin collection in your local town centre and telling people about SUDEP (check with your council if you need a licence for this)

We invited people to take part in our online awareness campaign using the ideas below:

  • Take part in our online 'Suck a lemon for SUDEP' campaign which launched early October, involve friends and family by sharing our Facebook posts and Tweets.
  • Like and share our Facebook posts and Tweets to raise awareness.
  • To commemorate those who have died, share a picture of yourself holding a photo of a loved one. 
  • Share a link to this SUDEP Awareness Day page where we will be posting more information.