Sudep Action Day is a special day devoted to raising awareness around the world about sudden unexpected death in epilepsy (Sudep) and inspiring action to save lives. It will be observed on Oct 19.
There are 50 million people in the world with epilepsy, which makes it one of the most common neurological diseases in the world.
Education and raising awareness on Sudep are important to help more people understand what it is.
Not everyone with epilepsy is aware of Sudep and epilepsy risks, which can put them in danger of worsening seizures, injury or of dying suddenly and prematurely.
The cause of Sudep is not yet fully understood, and it may differ between cases. Having active seizures puts a person at risk of injury and death. Epilepsy risk factors vary between people with epilepsy, and they can change over time.
Reducing risk plays a big part in epilepsy management. Reducing risks can include taking one’s medication as prescribed, avoiding triggers, getting adequate sleep, avoiding excessive alcohol or recreational drugs, and ensuring that family and caregivers are trained in seizure first aid.
Negative outcomes can be prevented for many people with epilepsy, and being aware of the risks and openly discussing them allow them to make informed choices about treatment and lifestyle.
Being aware of the risks and openly discussing them help them take positive actions to reduce any risks, and live as normal a life as possible. There are usually very few things that people with epilepsy cannot do.
There is a long way to go until Sudep is discussed openly in the epilepsy community. The potential for seizure control in many people with epilepsy should not be taken as a sign that epilepsy is not important. Let us stand up for epilepsy – the 50 million people with epilepsy deserve better.
Goh Keng Hwee
Epilepsy Care Group Singapore