How would you feel if you lost your memory? To not be able to remember a friend’s name, to forget something you had learnt at school or even a task you were in the middle of doing? This is the reality faced by some people with epilepsy. Throughout March on the #ERUKResearchBlog we’ll be looking at memory loss in epilepsy, and how research supported by you is helping to predict and prevent it.

Faustine’s seizures started when she was around 15 years old. Her teachers noticed she had become a bit ‘day-dreamy’ in lessons, when previously she had been an attentive student. A few months later, she started having myoclonic jerks, then tonic-clonic seizures.

The details of her diagnosis are still somewhat hazy for Faustine, especially from after her tonic-clonic seizures began. Despite her best efforts, she often found it difficult to remember what she had learnt in lessons, and was unable to answer questions first time round. She still finds this frustrating as a student in Oxford studying humanities.

“Struggling to find certain words or taking longer than my peers in situations like supervisions at university or debates can sometimes feel embarrassing,” Faustine says, “but I try and remind myself that it isn’t my fault, and I am doing the best I can, despite my epilepsy.”

Memory loss is one of the most common problems that people with epilepsy seek help for, whether it has result from seizures, medication side effects, or following surgery. Memory is something that most of us take for granted, and it can be embarrassing or frightening to lose it. This can significantly affect every aspect of a person’s life: education, work, daily tasks, and relationships.

The relationship between epilepsy and memory is not fully understood, which means we’re not yet able to predict memory loss or prevent it effectively.

Professor Arjune Sen, a consultant neurologist at John Radcliffe Hospital in Oxford, often speaks with people with epilepsy and their families who are worried about memory loss. In his Research Blog later this month, Arjune will share his experiences, and outline some of the latest research being done to improve our understanding of the link between epilepsy and memory.

Children and young people can be particularly affected by memory loss, especially when it comes to education, like in Faustine’s experience. Previously engaged students can appear to become disinterested and withdrawn. “I feel like there is a lot of awareness surrounding first aid and epilepsy,” Faustine says, “but nowhere near enough discussion around how it affects some students and impacts their memory and consequently education, daily.”

One researcher trying to understand memory loss in children is Professor Amanda Wood, from Aston University in Birmingham and Deakin University in Melbourne. For children undergoing epilepsy surgery, Amanda and her colleagues hope to predict how likely they are to develop problems with brain function and memory. Amanda will explain more about her work, supported by Epilepsy Research UK, in her piece later this month.

Another group particularly affected by memory loss is people with Down syndrome. In adults with Down syndrome, the development of epilepsy is very often linked to Alzheimer’s disease. As many as 80% of people with both Down syndrome and Alzheimer’s disease experience seizures, and those that do are likely to see a more rapid decline in their memory.

Dr Frances Wiseman is trying to untangle the relationship between Down syndrome, dementia and seizures, with support from a previous pilot study funded by Epilepsy Research UK. In her blog on World Down Syndrome Day, Frances will share the latest progress in her research, which could help to identify new treatments to control seizures in people with Down syndrome and Alzheimer’s disease.

As a woman of colour living with epilepsy, Faustine feels it’s important for her to share her experience and express who she is. She does this in part through Collective Conversationz, a community and magazine she founded for people from minority backgrounds like her to share their stories and views. Next week on our Research blog, Faustine will talk more about her experience of epilepsy, and what she feels that research could achieve for people in her situation.

“When I was younger, I worried a lot about my memory loss and was anxious about having to explain this to future employers or universities,” Faustine says. “But as I have gotten older, I have accepted that this is part of my epilepsy and therefore part of me. Essentially, I have learnt to be at peace with it, however frustrating it may be.”

Faustine has come to accept her memory loss, but it’s not right that she should have to. Memory loss is one of the most common side effect of epilepsy and its treatment, and yet we still don’t know enough to be able to prevent it. Only research can make sure that no one with epilepsy has to face losing their memory and the frustration this brings.

Keep an eye on the Research Blog during March, where Faustine, Arjune, Amanda, and Frances will be sharing their perspectives on epilepsy-related memory loss. They’ll also be speaking at our Research Roundtable webinar later this month – sign up to our E:Bulletin to be notified of when you can register for the session.