Why is it called SUDEP Action Day?
Because there are at least 21 epilepsy deaths a week in the UK alone – awareness is not enough, we must prioritise our safety and those of our loved ones.
That is why from 2017, this international day, supported by organisations across the world, is changing its name from Awareness to Action. We hope you join us again this year in leading the way however you can, wherever you are in the world.
Not everyone with epilepsy is aware of, or told about SUDEP (Sudden Unexpected Death In Epilepsy) and epilepsy risks, which can put them in danger of worsening seizures, injury or of dying prematurely. Some health professionals worry that discussing these risks could frighten their patients. But these negative outcomes can be prevented for many people with epilepsy; and openly discussing these risks allows them to make informed choices about treatment and lifestyle and helps them take steps to reduce any risks.
People with epilepsy & their families WANT to be told about SUDEP and epilepsy risks. Many bereaved families were NOT told about SUDEP & wish that this vital information had been shared as it might have saved their loved one’s life.
For SUDEP Action Day 2023 we want people to put safety first with #mysafetymatters
There are some easy ways to get involved, such as sharing our messages on social media, encouraging others to check out our website or putting up our SUDEP Action Day poster where people might see it.
We must encourage information with #mysafetymatters 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.
SUDEP Action Day is an opportunity to discover more about our organisation, what we do and how we do it. We’ll be sharing stories and information and we want you to do the same, to raise awareness about epilepsy and SUDEP and spread understanding.
Remember, with information there’s conversation…