One of the primary initiatives of the SUDEP Institute is to drive sudden unexpected death in epilepsy (SUDEP) education and awareness programs to people touched by epilepsy and to medical professionals.
Despite the Epilepsy Foundation’s efforts to raise awareness and fight discrimination against people who have seizures and epilepsy, public fear and misperceptions persist. As a result, many people with epilepsy do not disclose their condition and the general public remains unaware of its prevalence and the facts about the condition.
The reluctance to talk about epilepsy can prevent people with seizure from seeking the best treatment, understanding the risks of their condition, and taking steps to mitigate those risks. In addition, many people with epilepsy get their care from an emergency room or general practitioner who may not be aware of the latest treatment options and the risks associated with uncontrolled seizures.
The causes of SUDEP are unknown, but what is known is that by having as few convulsive or tonic-clonic seizures as possible, a person can reduce his or her risk of SUDEP. Hence, the SUDEP Institute continues to drive efforts that encourage people to seek optimal seizure control, to educate them and their families about SUDEP and how they can mitigate its risk, and to invite the health care community to talk about SUDEP and keep exploring new treatment options.
Current Efforts and Resources
We disseminate SUDEP information, educate people, and tackle this need for awareness via different tools and resources that include:
- The Foundation’s digital enterprise, which includes the SUDEP section of this website (epilepsy.com/sudep) and appropriate references throughout the site, as well as social media channels (Facebook, Twitter, Instagram, Google Plus, and YouTube).
- Infographics, specifically the "Managing Epilepsy and Seizures" infographic that has successfully educated people about seizure safety, and the "#DareTo Say SUDEP" infographic that was launched in Spring 2015, focuses specifically on the risk for SUDEP, and empowers people to decrease the risk.
- Webinars and presentations, including "SUDEP Counseling" that was developed to guide medical professionals on how to talk to their patients about SUDEP and "Investigating Death in Epilepsy" that educates death investigators on epilepsy mortality and gives guidance on how to investigate and report these deaths.
- The #DareTo Say SUDEP Initiative, which provides information on SUDEP and encourages people to become advocates.
- The SUDEP Challenge Initiative, which will be awarding more than $1 million for a series of at least three prize challenge competitions around predicting and preventing SUDEP.