SUDEP Action

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Study highlights need for epilepsy mortality prevention


A study in Sweden has highlighted the need for epilepsy mortality prevention.  Researchers found that people with epilepsy are 11 times more likely to die prematurely than the general population.  This risk is even higher in people with other conditions such as depression.

The research, led by Oxford University’s Seena Fazel, MD, Department of Psychiatry, was published in an online report in the Lancet on 22 July 2013.  The 41 year study looked at 69,995 Swedish adults with epilepsy born between 1954 and 2009 and another 660,869 within the same age group and gender from the general population.  In the follow up, researchers found that 6155 (8.8%) people with epilepsy died (at a median age of 34.5 years), compared with 4892 (0.7%) people in the general population.

This is why Oxfordshire charity SUDEP Action has campaigned for prevention of epilepsy  deaths for 22 years.  Commenting on the significance of the study’s findings, SUDEP Action  Chief Executive Jane Hanna OBE added in a statement: “We have known since the late 1990’s that epilepsy carries a significant increased risk of death compared with the general public and that a focus on epilepsy mortality ought to be a priority.  Research on people in the UK has also flagged up that people with epilepsy are dying prematurely and that those with depression are amongst those at high risk. 

This new research study is important because of the numbers of people in Sweden who were followed up for 41 years. It finds that 9% of people with epilepsy die young compared with 0.7 % of the general population and that preventing mortality in people with epilepsy should be a priority. It also strengthens the concern that people with epilepsy and depression should get special attention. The research found that 16% of the deaths were from accidents and suicide generally occurring in people with depression.”

SUDEP Action’s work has been recognised globally.  The charity’s Chief Executive Jane Hanna OBE was awarded a Global Impact Award on Epilepsy for her work towards epilepsy mortality prevention.  The accolade which has rarely gone to non-medics was last awarded to an epilepsy specialist in the UK 30 years ago.  The award, given out by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE) is one of the highest honours from medical and patient organisations working in the epilepsy field.

Professor Shorvon, Chair of the ILAE (British branch) representing UK doctors and nurses who nominated Jane Hanna OBE for the award said: “She had the vision and commitment to use her experience to throw light on the largely unrecognised issue of epilepsy mortality…22 years of conviction, enthusiasm and refusal to be deflected have resulted in a seismic shift in thinking and practice on SUDEP and epilepsy mortality not only in the UK, but internationally.  She has led the field successfully desensitizing SUDEP and epilepsy mortality and bringing it to the fore as a driver for improvements in care for people with epilepsy and their families”.  

SUDEP Action also recently launched The Epilepsy Deaths Register aimed at preventing epilepsy deaths.  This is the only existing register of its kind in the UK.

We would advise anyone who has concern about their epilepsy to discuss their condition and treatment with their health care team.