Research can help us reduce further harm to those impacted by the condition, by enabling us to understand exactly how epilepsy increases the risks of other conditions and unexplained deaths. We must also identify the factors that affect someone’s chances of developing epilepsy in the first place.
These vital areas of the Epilepsy Research Institute’s work are brought under a theme called ‘Mortality, Morbidity & Risk’. In this article, we look a just a few examples of our work in this area.
Why do some people have epilepsy but not others? How much is down to bad luck, and how much could be explained by other factors? Understanding this is vital if we’re to prevent more people from developing epilepsy and experiencing seizures.
One line of inquiry is whether a person’s circumstances affect their risk of epilepsy. Dr Kathryn Bush, who was awarded an Emerging Leader Fellowship by the Institute in 2022, has recently found that people living in the poorest areas of the UK have a 34% higher risk of developing epilepsy compared to people in the richest areas.
In a Q&A, Dr Bush explains that she and her team are looking into the factors that explain this link. “Once we have identified these factors, we can work out what can be done to try and reduce the risk of epilepsy in our most deprived communities,” she says.
Epilepsy often occurs with other neurological conditions, such as dementia. Although this two-way relationship presents extra challenges, it also provides opportunities for new ways of thinking about epilepsy.
To drive forward research into this relationship, the Epilepsy Research Institute hosted a joint event in early 2024 with the UK Dementia Research Institute, bringing together 20 leading researchers working in epilepsy and dementia.
Professor Matthew Walker is Chair of the Epilepsy Research Institute and co-led the meeting. He said, “We learnt that there is a lot of synergy between dementia and epilepsy research over ways in which we can approach both conditions, and the way in which understanding and treating epilepsy can be used to understand and treat dementia.”
Three more workshops have been planned to foster more collaborations between epilepsy and dementia researchers, which may one day help people with both conditions live a better life.
Tragically, 21 people with epilepsy die each week in the UK. That’s three deaths every day. Some are caused by accidents, injury, and suicide. However, others do not have an obvious cause and are called ‘Sudden Unexplained Deaths in Epilepsy’, or SUDEP.
We are working with the charity SUDEP Action to support research to understand these deaths and prevent them. Together, we’re funding a fellowship grant for a scientist studying SUDEP – and in doing so, nurturing a future leader in SUDEP research.
“By working together to drive research in this area, we hope to both reduce the incidence of SUDEP and avoid more families having to endure the tragedy of losing a loved one,” said the Institute’s chief executive, Rosemarie Pardington.
We also brought together researchers and people bereaved by SUDEP at a recent workshop to identify and address gaps in our knowledge.
“Our hope is that we can explore these gaps to better understand SUDEP risk and develop strategies to reduce this risk in both the short and long term,” said Prof Arjune Sen, Dr Rob Wykes, and Dr Amol Bhandare, who lead the ‘Mortality, Morbidity & Risk’ theme for the Institute.
Read more about the workshop and the key takeaways from the day in this article.
Identifying the risks that people with epilepsy face is important, but it only gets us so far. Research will help us to understand them in more depth and find new ways to prevent them – potentially preventing some people from developing epilepsy altogether. This will help to lift some of the burden and anxiety of the condition, and help more people live their life uninterrupted by epilepsy.
Do you want to help push epilepsy research forward and make real progress for the one in 100 living with epilepsy? Find out how you can get involved and join our #Onein100 campaign.
Find out more about the work of the ‘Mortality, Morbidity & Risk’ research theme.
