SUDEP Action Day was first launched in 2014 as SUDEP Awareness Day. Its purpose was to raise awareness of SUDEP and teach people to manage the risks associated with it. Later, in 2017, its name changed to SUDEP Action Day. Its purpose remains, to raise awareness of SUDEP, but now it’s going one step further. SUDEP Action Day aims to change and improve the lives of people with epilepsy, by taking action.
This year, SUDEP Action Day falls on October 18th. This blog will provide insight into SUDEP Action Day and explain how you can get involved. First, though, what is SUDEP?
SUDEP stands for sudden unexpected death in epilepsy. This refers to the sudden death of somebody with epilepsy where there is no clear cause of death. Currently, the causes of SUDEP are not very well understood. Many SUDEP deaths occur overnight, making them difficult to observe. This likely contributes to the lack of understanding of SUDEP. However, researchers are still exploring the causes by looking at the effect of seizures on breathing and the heart. Increasing awareness of SUDEP will drive researchers to study it further.
SUDEP affects around 1 in 1000 adults with epilepsy each year. Although there is currently no cure for SUDEP, there are ways to manage the risks. That’s why this year’s theme is #mysafetymatters.
How can you get involved?
- Familiarise yourself with the risks.
There are links between SUDEP and tonic-clonic seizures, or seizures that are frequent and uncontrolled. You can lower the chance of SUDEP by managing your seizures with medication, epilepsy alarms, or alternative therapies. Epilepsy affects everybody differently, so you’ll need to take time to find the right treatment for you.
- Share what you know.
We raise awareness of a subject by speaking up and having open discussions, in person or online. You can use the hashtag #mysafteymatters on Twitter or Facebook to talk about how you are managing and reducing the risks of SUDEP.
- My Way to 5k event.
My Way to 5k is back for its fourth consecutive year. It is a virtual awareness event, meaning you can take part anyway, anywhere. Run, cycle or walk 5k, the choice is yours. The event takes place throughout October and registration is online.
The My Way to 5k event is not the only way to raise money for SUDEP Action Day. There are a variety of things you can do to raise money for SUDEP, such as arranging a bake sale! Head to SUDEP.org for fundraising advice, materials, information, and more.
- Promote communication.
It’s important to discuss SUDEP with your doctor if you have not yet done so. Your doctor or epilepsy specialist will be able to give you accurate facts about SUDEP. Because they know you, they will also understand exactly how and if you are at risk of SUDEP.
Even if you don’t have epilepsy, you can still get involved in the discussion. Contact your local health professionals to find out if they usually discuss SUDEP with their epilepsy patients. If they don’t, encourage them to start doing so. Patients with epilepsy need to be aware of SUDEP and how it may impact them.
- Remember the lives lost.
If you have lost somebody to SUDEP, you might like to share their story on Facebook or Twitter. You can start with the hashtags #SUDEPActionDay2023 and #InMemory. You can also share this with the North American SUDEP Registry. By reporting SUDEP-related deaths, you can help their team of researchers to learn more about this disease.
The grief caused by SUDEP is particularly harsh because it comes unexpectedly. If you, or somebody you know, are struggling please know that you are not alone. You can turn to charities such as Epilepsy Action or SUDEP Action for support.
By participating in SUDEP Action Day, you can play an important role in spreading awareness and supporting those affected by SUDEP. There are various ways you can get involved, from sharing information on social media to organising local events or fundraisers.
Together, we can make a difference in the lives of those living with epilepsy and work towards reducing the risks of SUDEP. If you’re passionate about this cause, consider getting involved with SUDEP Action Day this year and help make a positive impact.
SUDEP Action Day is not the only important date on the epilepsy calendar. The international epilepsy day, Purple Day, returns on the 26th of March 2024.