People with Epilepsy

Thank you for supporting SUDEP Action Day!

Join us and #SpeakUp2SaveLives this year, whether that’s having a conversation with your doctor about 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 (2020) - #SpeakUp2SaveLives

As leaders in SUDEP and epilepsy deaths for over 25 years, SUDEP Action know the topic of SUDEP raises questions and can be worrying for many to think about. But SUDEP Action Day is here to help people take positive steps towards reducing epilepsy risks.

The pandemic has highlighted huge inequalities and we know that SUDEP, epilepsy risks and epilepsy deaths are one of the neglected areas, made worse by COVID-19. Thousands of people with epilepsy, their carers and health workers, have reported through SUDEP Action’s international research project that:

  • epilepsy risks have worsened,
  • people with epilepsy are having more trouble accessing the care and services they need

That is why this year we want you to #SpeakUp2SaveLives and encourage vital conversations on epilepsy risks and SUDEP.

Whether you have a little time, or a lot; if you can #SpeakUp2SaveLives you will be raising much needed awareness which could help people with epilepsy around the world live safely – and help save lives!

How you can #SpeakUp2SaveLives:

In just a few simple actions, you can make a real difference to others this SUDEP Action Day!

Quick ways to #SpeakUp2SaveLives:

1. Liking, share or retweet our social media posts on the Day to help spread our key messages worldwide. Use the hashtags – #SUDEPActionDay2020 and/or #SpeakUp2SaveLives –  Don’t forget to change your social media profile picture to the event logo!

2. Pledge your support by clicking ‘attending’ on the SUDEP Action Day Facebook event page and by sharing an image on social media of you wearing something orange with the message ‘Together we can #SpeakUp2SaveLives this #SUDEPActionDay2020.’

If you have a little more time to #SpeakUp2SaveLives:

1. Could you share your story with us about why knowing about epilepsy risks and SUDEP is so important? Contact us at info@sudep.org if you would like to be involved.

 2. Help us to continue to #SpeakUp2SaveLives by holding a #SUDEPActionDay2020 My Way to 5K awareness event.

3. Could you complete one of our #SpeakUp2SaveLives campaign tasks too? Find out more here.

Don’t forget to take part in SUDEP Action’s ongoing research into the impact COVID-19 has and is having on people living with epilepsy (and their families) – share your experiences here.

Top Tips

1. Learn as much as you can about epilepsy risks, so you know how they apply to you, and what to look out for if your epilepsy, seizures, health or lifestyle, changes:

a) Check out our What is SUDEP? and Downloads pages for key information and advice: understanding your condition is a powerful step to reducing risk. You can also find more information, tools and resources to help here.

b) Talk to your health professionals (at your next appointment) about SUDEP and any positive actions you can take to minimise risk

c) Do you belong to any epilepsy groups? Share this information with them too

2. Check your epilepsy risks so you can take positive steps to reduce any you have. Remember epilepsy risks change over time and each person’s risks can be different:

a) 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!

b) Make sure you have a yearly epilepsy review with your health professional to check for any changes

c) Check out any national epilepsy guidelines for information to help you know the care to expect

Remember:

– Taking your epilepsy medication regularly and reliably is one of the best ways to help reduce your epilepsy risks

– Don’t make any changes to do with your epilepsy or medications without speaking to your health professional first

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

On Friday 23rd October 2020, SUDEP Action is teaming-up with the SUDEP Awareness Walk for a special SUDEP Action Day MyWayto5K event.

Walk, run, cycle, scoot, hike, climb, use a wheelchair or push a pram, on the Day, or over a few days – however you choose to reach your 5K, together we will be remembering and raising vital awareness to help save lives.