“Epilepsy tends to interrupt Olivia’s life roughly every 10 minutes in some way or another,” her mother Cecilia says. “One minute she can be dancing and happy, and the next minute she will be still and expressionless.”
Olivia was diagnosed with a rare type of epilepsy called Lennox-Gastaut syndrome when she was two and a half years old. Now aged seven, she takes several medications to help with the wide range of seizures she experiences on a daily basis. Her condition dominates the lives of Olivia and her parents. “For us as a family, it is very hard to ever relax or do ‘normal things’.”
Epilepsy has a huge impact on the lives of people affected. The seizures themselves can be exhausting and dangerous. And while drugs can control seizures for many, side effects like drowsiness and a lack of energy can interfere with school or work, or other daily activities.
On top of that, the unpredictable nature of seizures can cause anxiety for people, preventing them from enjoying social gatherings. For some people, the threat of seizures may mean that they can’t go out alone, stripping them of their independence.
During the UK Epilepsy Priority Setting Partnership, we asked people affected by epilepsy to identify the key questions which, if answered, would make the biggest difference to their lives. Among the ‘Top Ten’ questions was “How can quality of life be improved for people with epilepsy, their families and carers, including those bereaved by epilepsy?”.
This month on the Research Blog, we’ll be looking deeper into this question, of how epilepsy interrupts the daily lives of people affected and those around them – and what can be done about it.
The impact of epilepsy on a person’s life is compounded when they live with other conditions. As many as 40% of people with epilepsy also meet the criteria for a diagnosis of autism, and Dr Charlotte Tye is interested in how the two conditions develop in childhood.
In her research project, supported jointly by Epilepsy Research UK and Autistica, Charlotte is measuring brain activity in infants with epilepsy to spot the early signs of autism. In a blog post later this month, Charlotte will explain how this will help us develop better ways to support families as children with epilepsy grow and develop, improving long-term quality of life for those affected by both conditions.
Epilepsy Action are a national charity committed to supporting a better life for everyone affected by epilepsy. They provide information and advice, and run groups where people with epilepsy can support each other, and are proud founding partners of the Epilepsy Research Institute UK.
Later this month, Alison Fuller, Director of Health Improvement and Influencing at Epilepsy Action will talk about the work the charity does to help improve quality of life for those affected by epilepsy. Alison will also share insights into how research can help minimise the impact of the condition on people with epilepsy, and those around them.
Olivia and her parents are trying various options including the ketogenic diet, and both are helping to reduce the number and severity of the seizures she experiences. Next week on the Research Blog, Cecilia shares more about Olivia, the impact her condition has on the family, and their hopes for the future.
Cecilia believes that parents and researchers must work together to help children like Olivia. “The knowledge each group has is really two sides of the same coin – parents have lived through the experience and know about the day-to-day impact of the condition, and researchers know about the underlying scientific causes and potential ways to treat epilepsy.”
We agree that people affected by epilepsy must be involved in the direction of research. This is especially true when looking at the influence of epilepsy on people’s daily lives, outside of medical appointments, beyond the tests and treatments.
Keep an eye on our Research Blog during June, where Cecilia, Charlotte, and Alison will be sharing their perspectives on how epilepsy disrupts the daily lives of everyone affected. Sign up to our E:Bulletin to get the latest blog posts and updates as soon as they are published.