April 2022. Out of the blue, my then 13-year-old daughter had a tonic clonic (TC) seizure whilst at her swim club. Luckily, she wasn’t in the water. There was shock and confusion. We had no family history of seizures; my daughter had no other medical conditions.
Roll on a few months to July, and she had a second TC, again at swimming. My stomach still flips when I remember her face – drooped on one side as though she’d had a stroke. It took me a long time and several therapy sessions to control my flashbacks of that image and the associated panic attacks. We finally got an appointment for an EEG in August, a few days after she had her third and fourth TC on the same day, during a heatwave. She was diagnosed with epilepsy and started medication immediately.
I tasked myself with finding out as much about epilepsy as possible. With a background in research, my instinct was to head to published research papers. I also sought out epilepsy organisations and made sure that I was following them on social media. In August 2022, I completed a survey seeking views on the importance of different research areas from the Epilepsy Research Institute (then Epilepsy Research UK). This led to me attending the UK Epilepsy Priority Setting Partnership Workshop in London and, shortly afterwards, I joined the Shape Network.
Through the network, I have had the privilege of helping review research proposals which have been submitted for funding. I also regularly search for opportunities to get involved in clinical trials. My daughter has taken part in a mental health study for children with epilepsy, and my son helped test a wearable brain scanner. I took part in a hearing study because it involved having an MRI scan and I wanted to better understand what my daughter was having to go through.
My passion for getting involved in epilepsy research is two-fold. First and foremost, I am a mum who will do anything to help her daughter navigate life with epilepsy. The more research I get involved with, the greater the chance I’ll learn something that could help my daughter. Secondly, researchers need input from people with lived experience of epilepsy to make sure they are doing the research that is needed. Ideally, the epilepsy community should be at the very heart of every research project; citizen scientists actively working alongside researchers to help determine the research direction, aims and outputs.
It’s very easy for researchers to fall into the trap of believing that they know what research will be of benefit for people with epilepsy. A new effective drug with fewer side effects might sound like the holy grail, but this might not be top of the list for many people with epilepsy. Everyone’s epilepsy journey is different and context is a big influencer when it comes to priorities. For me, my wish list includes: (1) greater understanding of which vitamins and minerals are depleted by certain anti-seizure medications; (2) developing and trialling first aid methods that could help stop a seizure sooner; and (3) investigating whether treating epilepsies caused by brain inflammation with anti-inflammatories can ‘cure’ those epilepsies.
Research is a phenomenal tool that has the power to transform epilepsy diagnosis and treatment. By working together, we can harness this power to bring real benefits to the day-to-day lives of people with epilepsy.
Research needs people affected by epilepsy to get involved, which is why we’ve built our Shape Network – the UK’s largest group of people affected by epilepsy who are interested in research. We share opportunities for people with epilepsy, their family members and carers to get involved in all aspects of research. Find out more and join the network here.
