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SUDEP - what we are doing

Every year 600 people lose their life to SUDEP. Epilepsy Society is working hard to reduce the overall risk associated with epilepsy by reducing seizures and looking more closely at those people most at risk. Our work encompasses medical research, providing information and helping people to manage their epilepsy.

Medical research into SUDEP

This slide shows brain tissue from a SUDEP patient. By studying the distribution of cells in the brain we can find out about extent of post-seizure changes. Through genetic research we are hoping to identify gene changes which could increase an individual's susceptibility to SUDEP. For example, certain people may be more vulnerable during a seizure because specific systems in the brain which should 'dampen' down the electrical activity, fail to operate efficiently.

At our new Epilepsy Society Research Centre, researchers are examining DNA samples of people who could be at risk of SUDEP due to epilepsy and cardiovascular complications. We will then compare these with further DNA samples donated for research by people who have died from SUDEP.

We hope this research will provide vital clues as to who is at risk from SUDEP and perhaps offer those individuals a chance to take potentially life-saving preventative measures.

Information and awareness raising

Tackling SUDEP is not just about medical research or assessment but also about raising awareness, and managing risk, especially among high risk groups such as young adults.

Social networks such as Facebook and Twitter are key to connecting with young people who may be going through a transitional time of their life and gaining greater independence. These provide an ideal platform to engage with young people and help them understand and take control of their epilepsy. We help people to self-manage and monitor seizure control through resources such as our phone app and our just diagnosed resource. 

Epilepsy management

Getting the right treatment and medication is vital and NHS referrals can be made to our epilepsy specialists, assessment centre or therapeutic drug monitoring service. Our Sir Williams Gowers Assessment Centre is a unique tertiary referral centre which transforms lives for people who either need medication changes, pre-surgical assessment or a better diagnosis of their epilepsy. But many people with epilepsy do not know that they can be referred to a facility like this.

Strategic alliance

In 2012, our 120th year, we announced a strategic alliance with SUDEP Action (formerly Epilepsy Bereaved) as we believe that the natural synergy between the work of the two charities will prove to be a powerful driving force in tackling SUDEP.