People with Epilepsy

Thank you for supporting SUDEP Action Day!

Join us this year, whether that’s having a conversation with your doctor about epilepsy risks or sharing vital information with others on SUDEP – now, more than ever it is #Time2Change how the world sees, discusses and tackles epilepsy risks.

We know many people with epilepsy still aren’t receiving vital epilepsy risks/ SUDEP information, yet people with epilepsy & their families WANT to be told about SUDEP and epilepsy risks. We also know that many bereaved families were NOT told about SUDEP & wish that this vital information had been shared.

It is #Time2Change this. So that every person with epilepsy, their families and health professional are not only aware of these risks (which can lead to death if ignored) but are able to take an active role in discussing, reviewing and reducing them.

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!

How you can show it is #Time2Change:

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

 

  1. Write to your local health professionals to check they communicate about SUDEP with their epilepsy patients. If they don’t, encourage them that it is #Time2Change their epilepsy risk communication. You can download a template letter here.
  2. Encourage your local policy makers to support SUDEP Action Day – contact them ahead of the day & ask them to show their support for #Time2Change (don’t forget to say why it is important to you!) – See here for resources to help.
  3. Take part in the SUDEP Action Day My Way to 5k event – however you complete it, & whoever you complete it with, could you raise vital awareness in your local area? Get some inspiration here.
Top Tips

1. #Time2Change what you know about epilepsy risks. What are the key things to look out for? How do the apply to you and your epilepsy? What changes could you make to reduce any risks you have? These resources can help:

a) Check out our What is SUDEP? and Downloads pages: 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 (online or in person)? Share this information with them too. SUDEP Action Day messages will be shared via the SUDEP Action social media accounts – making them easy to share online.

 

2. #Time2Change how you keep an eye on 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 monitor your risks: 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 Wednesday 20th October 2021, 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.