This month on the #ERUKResearchBlog, we’ll be focussing on epilepsy in childhood and how the experiences of young people can shape the research needed to tackle the biggest challenges we face.
Although 65,000 children in the UK are living with epilepsy, each child’s experience is unique.
Annie was too young to remember being diagnosed with epilepsy but has lived with absences and complex partial seizures for most of her life. In 2019, she had brain surgery to try and control her seizures, but it didn’t stop them completely. Next week on the Research Blog, Annie will share her own story of what it is like growing up with epilepsy, and the impact it’s still having on her as a young adult.
Epilepsy can have a significant effect on a child’s learning and development, and their ability to participate in normal, everyday life. The condition in children is often very different to that in adults, and so deserves special attention from research. That’s why Epilepsy Research UK has devoted £1.5 million of funding to this area.
Research can help us to better understand what causes epilepsy in children. The fact that some children develop epilepsy shortly after birth suggests that genes have a role to play. Identifying these genetic causes will enable scientists to find new targeted medicines, and even develop cutting-edge gene therapies, to control seizures long-term.
Epilepsy, and underlying neurological conditions which often go hand-in-hand, can have a huge effect on brain development, which can lead to children requiring constant care for life. Research can help ensure that every child gets the early diagnosis and effective treatment needed to prevent this from happening.
Central to developing better treatments is minimising their side-effects, something that is especially important for children. For example, anti-epileptic drugs can have a significant and life-long impact on mood and behaviour. We need to better understand how to manage epilepsy during crucial phases of brain development in childhood and adolescence.
One scientist looking for better and kinder epilepsy treatments is Dr Sukhvir Wright. Dr Wright is studying autoimmune-associated epilepsy, where seizures might be caused by the body’s immune system interfering with brain cells. However, not a lot is known about how or why this happens. In her Research Blog later in the month, Dr Wright will explain how an Epilepsy Research UK Emerging Leader Fellowship in 2016 has helped gain an understanding of how autoimmune-associated epilepsies work, as well as helping in the search of targeted treatments.
But regardless of the type of epilepsy or how it is being treated, effective healthcare must be based upon the experiences of people living with the condition. Given that epilepsy in childhood is a unique experience, it’s even more important that we find ways to incorporate the views of children and their families in decisions about their treatment.
Dr Hanna Kovshoff is developing ways to do exactly this, with children who are having surgery to help control their epilepsy. In her Research Blog, Dr Kovshoff will explain how her team is gathering the views of children and their families, as well as understanding the role that schools can play in supporting them, in her Explore Pilot Study
As well as improving healthcare and support services, the views of children and young people can also help shape research. Annie is a member of Young Reps, a panel of young people who advise the charity Young Epilepsy on their work. Young Epilepsy and Epilepsy Research UK are jointly funding a research fellowship, and we’re asking the Young Reps to review the applications from scientists, alongside our Scientific Advisory Committee of academic experts. The aim is that this will maximise the impact that the research could have for young people with epilepsy.
Ultimately, we hope that the perspective of young people, and a specific research focus on childhood epilepsy, will help to ensure that every child gets the best chance to live their life to the fullest.
Keep an eye on the Research Blog during January to read upcoming blog posts from Annie, Dr Sukhvir Wright and Dr Hanna Kovshoff, where they will all be sharing their experiences and hopes for what research into childhood epilepsy will achieve.