People with epilepsy

Thank you for supporting SUDEP Action Day!

Wherever you are in the world,  thank you for getting involved in SUDEP Action Day!

Join us by taking #5forEpilepsySafety this year, whether that’s 5 minutes to learn more about your epilepsy risks or sharing vital information with others on SUDEP.

Below are some ideas of how you can get involved.

You may also find extra ideas on your local epilepsy organisation’s website. You can find a list of those supporting the day here.

Don’t forget to join us over on our Facebook event page to show you’re supporting the day!

This year's theme - #5forEpilepsySafety

As leaders in SUDEP and epilepsy deaths for over 24 years, SUDEP Action know the topic of SUDEP raises questions and can be worrying for some to think about. But SUDEP Action Day is here to help people take small positive steps towards reducing epilepsy risks.

This year we want you to take #5forEpilepsySafety

Whether you choose to do one thing or five (or more!) taking #5forEpilepsySafety can help  us raise awareness which could save lives by sharing risk factors, asking questions, writing to your MP or talking about your epilepsy with friends and family.

Take #5forEpilepsySafety with these 5 Actions:

1. TALK

Knowledge saves lives. Join the community by supporting the online campaign:

  • Share the campaign key messages, infographics and posters. Could you take a picture holding them?
  • Share pictures of how you’re getting involved in SUDEP Action Day to shout about SUDEP and epilepsy risks
  • Show you support the day with a SUDEP Action Day iron on T-shirt Transfer
  • Use the campaign hashtag #5forEpilepsySafety and #SUDEPActionDay2019 to spread the word
  • Change your social media cover here
2. LEARN

Learn more about what SUDEP is and other epilepsy risks:

 

  • Take a look at the What is SUDEP? and Downloads pages for key information and advice: understanding your condition is a powerful step to reducing risk.
  • Talk to your health professionals about SUDEP and any positive actions you can take to minimise risk
  • Do you belong to any epilepsy groups? Share this information with them too
  • Remember if you’re worried about SUDEP or your epilepsy risks, please speak to your health professional and don’t make any changes to your medication or treatments before doing so
    3. CHECK YOUR RISKS

    Risk factors vary between individuals and can change over time. Can you take #5forEpilepsySafety to:

     

    • Consider using a seizure diary or app to help you keep an eye on your epilepsy: even if you are seizure free or your seizures are controlled, it can still help!
    • Make sure you have a yearly epilepsy review with your health professional to check for any changes
    • Check out any national epilepsy guidelines for information to help you know the care to expect
    • Learn more about your risks from the section above and here.

    (Remember: don’t make any changes to do with your epilepsy without speaking to your health professional first)

      4. CAMPAIGN

      Help us smash the stigma by talking openly and honestly about your epilepsy:

       

      • Tell those around you how they can support you day-to-day or help during a seizure, find our seizure first aid poster here
      • Write to your local MP or policy maker so that they can become an epilepsy ambassador
      • Share the #5forEpilepsySafety campaign images and downloads – could you create a display somewhere?
      • Ask your local GP surgery, epilepsy clinic or epilepsy group to display leaflets on SUDEP and epilepsy risks
        5. FUNDRAISE

        Would you be able to take #5forEpilepsySafety and organise or be part of a fundraiser this year on SUDEP Action Day?

         

        • Get those running shoes on and take part in a sponsored race
        • Not afraid of heights? Why not take part in a sponsored bungee jump!
        • Prefer to find inspiration from GBBO? Get your bake on and hold a bake sale to raise funds
        • For more ideas click here