Over the past few months, PhD student Akanksha Jain from the University of Edinburgh has been working alongside Epilepsy Research UK to help with the development of the SHAPE NETWORK. The main part of her role has been collating and analysing the responses to the SHAPE questionnaire. In this Research Blog, Akanksha reflects on her time with the charity, what she will take away from the experience, and also discusses the importance of the SHAPE NETWORK for people affected by epilepsy.
Every day 87 people are diagnosed with epilepsy. In other words, every day 87 lives are suddenly interrupted. And for many, interruptions then become a regular part of life.
To address the significant disruptions epilepsy causes for so many people, in October 2020 Epilepsy Research UK launched the #ALifeInterrupted campaign. Since then, the campaign has been highlighting the disruptive, interruptive impact of epilepsy, addressing the inequalities in research funding, and calling on people affected by epilepsy to shape the future of research. Many of you reading this blog may have filled in a SHAPE NETWORK questionnaire; if so, you will have received a welcome email from me. So how did I get involved in this project?
I became curious about how the brain works during my undergraduate degree. This led to me applying for a PhD in neuroscience at the University of Edinburgh with supervisor Professor Mike Cousin, who also chairs the Epilepsy Research UK Scientific Advisory Committee. A year on, my PhD project focuses on understanding the processes in cells that control chemicals in brain communication and how they work during periods of high brain activity. Since a PhD project like mine is mostly spent working behind closed doors in a lab, I rarely get to experience the wider impact of the research we do. So, as part of my PhD, I have worked with the team at Epilepsy Research UK to see the real-world effects of research and it’s benefits for people living with epilepsy.
As with many things last year, my involvement has been “virtual”. Working remotely meant I could carry out this project whilst living in Scotland, despite being 500 miles away from the charity office in London. Although I was worried about missing out on the social aspects of work, Caoimhe Twohig Bennett, the Head of Research, was always on the other end of Microsoft Teams waiting to answer my questions, or even just to gossip about the latest episode of the Great British Bake Off. Caoimhe even got me started on Twitter (sorry you had to nag me for ages!)
The #ALifeInterrupted campaign aims to build the largest community of people affected by epilepsy – the SHAPE NETWORK – to influence and shape the future of epilepsy research. The first step to becoming part of the network is the Shape questionnaire, which you can find here. The main focus of my project was to analyse the questionnaire responses in order to inform the future directions the network would take. Although I have not experienced epilepsy first-hand, reading the compelling and heartfelt personal stories shared in the responses has been so insightful into what having epilepsy really means.
Epilepsy is more than having seizures, and this is clear in the accounts from people who have joined the SHAPE NETWORK. Epilepsy disrupts so many aspects of life, from the ability to drive to career choices, from daily life to major life decisions. If that is not enough, along with unpredictable seizures and the risk of Sudden Unexpected Death in Epilepsy (SUDEP), epilepsy medications can also carry severe side effects. We know research can bring new and effective treatments for tackling epilepsy, but research can be expensive and can take a long time. This is why the responses to the SHAPE questionnaire will be invaluable for prioritising research that is needed now and in the future.
Looking back, as my time with Epilepsy Research UK comes to an end, it has helped me to see the bigger picture of research. When working with cells at the early stage of scientific research during my PhD, it can be difficult to see how they apply to real-life or the impact the work can have on patients. Research takes a long time, but it has been amazing to see first-hand how research can directly benefit the lives of people with epilepsy. Most importantly, I leave with a better understanding of how charities work and how their immense support brings research from the lab bench to the clinic, making a real difference in people’s lives.
We are incredibly grateful to Akanksha for her hard work during her time with us. Thank you also to the East of Scotland Bioscience Doctoral Training Centre Partnership (EASTBIO) who funded this project as part of a Professional Internship for PhD Studentship, and to Professor Mike Cousin, Akanksha’s PhD supervisor.