Sophie

People affected by epilepsy can make a substantial and positive contribution to the development of research into the condition. In some cases, their involvement can also be life-changing. Sophie, 21, took part in Dr Antonio Valentin’s study, funded by Epilepsy Research UK, to investigate if electrical brain stimulation could be used to treat drug-resistant epilepsy. She has now been seizure-free for six years.

When were you first given a diagnosis relating to epilepsy? What tests were done?

In May 2011 my mum showed a neurologist a video of me having a seizure that she had taken on my phone. They were able to tell it was something neurological, so an MRI and EEG were carried out a week later. I was formally diagnosed with epilepsy in the summer of 2011.

What was the immediate reaction to the news?

Personally, I just wanted it to just go away. I wanted answers about how to make it stop. I was willing to do anything.My family were relieved that the seizures weren’t being caused by a brain tumour or something more catastrophic. Their concern was more around what having epilepsy meant for me and what might be causing it. Initially I didn’t talk about my diagnosis to friends. When the seizures began, they were not obviously visible so I could hide them. Once people realised I had epilepsy, there were different reactions – at a younger age it was sometimes seen as attention seeking.

How has epilepsy interrupted your life?

It has had a significant impact. Driving is still not possible and is hard for me to contemplate. I didn’t swim or even ride a bike. Even things like washing myself had to be so controlled. I remember distinctly my mum running up the stairs if I ever dropped something while in the shower. Equally, my learning was severely impaired. I struggled for years with most subjects which my brain struggled to process, especially maths and the sciences. This made school increasingly hard. Being in school plays or playing sport in the evenings was near impossible due to the number of seizures I had.

How was your experience of being involved in Dr Antonio Valentin’s research?  

Being part of Dr Valentin's research was life-changing. The team was so caring and put me at the front of their day-to day lives for over two weeks in order to carry out their trial. I remember Dr Valentin arriving some days at 5 or 6am to check on me. The team consistently put me at ease and made me feel completely safe. I wouldn't change taking part for the world.Prior to the trial my odds were pretty bleak, with multiple surgeons saying that I would probably be paralysed on the right-hand side of my body. Dr Valentin and Dr Selway’s team clearly felt this was not an option and did their utmost to prove these odds wrong. Despite the context of brain surgery, the experience was brilliant.

Since undergoing the procedure and surgery at the age of 15, you have been completely seizure-free. What would you say to anyone newly diagnosed, or their family, as a result of your experience of the condition?

Whilst epilepsy can feel so scary and daunting, it is not necessarily a life sentence. There is so much that is yet to be known about epilepsy, so don’t give up hope or despair. The research currently being carried out is so promising.Likewise, everyone has different experiences. Make sure you surround yourself with family and friends who can support you. Anxieties around epilepsy are so understandable, but they can definitely be eased by making people aware of your condition.

What are your hopes for the future regarding epilepsy research or general awareness and understanding of the condition?

It is so important that we increase general awareness of the impact epilepsy has on mental health and learning. It took two years for people to realise and tell me, “Ah yes – you're struggling at school because of epilepsy". We just didn't understand the connection for so long.There is also a common assumption that epilepsy is always photosensitive – this is something that needs to be tackled as very often photosensitivity is not the trigger. People often thought my seizures must be something else due to there being no flashing lights present.I hope research will continue searching for ways to cure epilepsy or reduce its effects, particularly through developing medications with fewer side effects.- Sophie, April 2022