Epilepsy for me was a ‘bolt out of the blue’,” Eleanor says. “It started when I was 34 years old. Apart from regular bouts of hay fever in spring and summer, I was in good health.”
Eleanor was eventually diagnosed with complex partial seizures and prescribed anti-seizure medication. But after 10 months they could no longer control her epilepsy, and Eleanor has never since experienced long periods without seizures. “It meant doing anything on my own was worrying, so I lost a lot of self-confidence,” she says.
Although Eleanor was able to stay in her job at a pharmaceutical company, an increase in her seizures and side effects from medication eventually meant she had to stop working at 51 years old. She feels her continuing seizures have closed doors to lots of opportunities, and made it difficult to make plans for the future.
Eleanor’s experience of drug-resistant or ‘refractory’ epilepsy is all too common. There are over 600,000 people living with a diagnosis of epilepsy in the UK, and one-third experience seizures that do not respond to treatment.
Continuing seizures have a huge impact on people’s lives, and their family, friends, and colleagues. These knock-on effects are as varied as the people experiencing them. Seizures hinder education, hold back careers, and prevent plans.
The sheer number of people whose seizures remain uncontrolled is a continuing challenge for healthcare professionals and scientists alike. Epilepsy Research UK is determined to understand why anti-seizure medication relieves some people of their seizures, but not everyone.
On the Research Blog this month, we’ll be looking closely at refractory epilepsy, and what we can do about it.
Professor Ley Sander is a world-leading neurologist at University College London, with a special interest in epilepsy treatments, and is Medical Director at the charity Epilepsy Society. In his article on the Research Blog later this month, Ley will be giving us an overview of refractory epilepsy, looking at what we know about why anti-seizure medications work for some but not all, and how current research offers hope that more people will live a seizure-free life in the future.
One of the big questions about refractory epilepsy is whether it can be predicted. When someone is diagnosed, are there signs that could act as a ‘red flag’ that could tell doctors to explore treatments other than medications?
One researcher trying to answer that question is Professor Mark Richardson. Mark and his team at King’s College London are using artificial intelligence to pour through the anonymised medical records of tens of thousands of people with epilepsy. They expect this analysis to reveal clues that doctors could use to predict how likely someone is to have uncontrollable seizures. On the Research Blog later this month, Mark will explain how this project, which is part of the Epilepsy Research UK and Angelini Pharma strategic alliance, could lead to more effective treatments for everyone with epilepsy.
Eleanor’s interest in medicine spurred her on to learn more about epilepsy. This led her to attending Epilepsy Research UK webinars, and eventually taking part in the UK Epilepsy Priority Setting Partnership (PSP).
During the PSP exercise, people affected by epilepsy decided on the most important questions they wanted research to answer. Eleanor was pleased to see that “What causes drug-resistant (refractory) epilepsy, and how can it be best treated?” was included in the Top Ten Priorities for epilepsy research.
“My hope for epilepsy research is that thinking ‘outside the box’, and considering the individual circumstances of each person with the condition, might bring new ideas on how to help people with this condition finally live seizure-free,” Eleanor says.
In her blog post next week, Eleanor will share more about her experience of epilepsy, and her views on the importance of research.
Over 200,000 people in the UK like Eleanor continue to experience seizures that drugs fail to control. Research is the only way we’ll be able to understand why this is the case, and what can be done about it. By putting refractory epilepsy on the research agenda, we will find ways to relieve people of their hunt for answers, so they can live the seizure-free life they deserve.
On the Research Blog this month, Eleanor, Mark, and Ley will be sharing their thoughts on how we can best tackle refractory epilepsy. Sign-up to our emails to receive updates on the latest articles and other news from Epilepsy Research UK.
