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How the potential of data research helped me learn to live with epilepsy



Epilepsy Research UK Shape Network Member

- Data Science How the potential of data research helped me learn to live with epilepsy

Date Published: March 8, 2023

Author: James Matejka

With no indication of the cause, Ian began having seizures and was diagnosed with epilepsy at the age of 47. His life was then put on hold. As an outlet for his passion for sport, Ian went on to study for a master’s degree specialising in exercise in epilepsy, combining this with his background in computer science. Ian joined our Shape Network and took part in the UK Epilepsy Priority Setting Partnership and in this blog, Ian shares more about his experience of epilepsy and why he’s excited about the potential of data science.

How has epilepsy interrupted your life?

In May 2016, at the age of 47, I started having seizures out of the blue. My epilepsy diagnosis was swiftly followed by four months of being too poorly and too scared to leave the sofa. Life as I knew it changed forever.

My 50-hour working week – a mix of IT and football coaching – fizzled out to zero overnight. It was replaced by the occasional slow shuffling walk of a few hundred yards down our street and lots of daytime TV. I was lucky enough to have a small army of friends and family (especially Mrs J) who helped me get accustomed to the same sickness, headaches, dizziness, cuts, bruises, forgetfulness, bitten tongues and everything else that fellow people with epilepsy can well relate to.

Before epilepsy I had been a regular runner, having completed around eight marathons, dozens of shorter runs, and I played football, skied… the list goes on! I had considered myself to be fairly fit. But my confidence had been shattered by my diagnosis. I worried that exercise would somehow induce a seizure and lead to injury, so I simply stopped altogether.

So, like everyone nowadays, I consulted Dr Google to try and find out what was wrong with me and what I should do to get better and back to exercising. Trawling websites was all well and good, but I wanted to ‘properly’ educate myself about epilepsy so I decided to undertake a master’s degree. Embarking on any master’s at the age of 49 is hard enough, but choosing to study in a totally alien subject area is just bonkers! But luckily for me, my passion for the subject and my personal interest in the outcome of the research motivated me to carry on, especially when putting in what felt like thousands of hours in the university library.

And it paid off – I learnt so much about epilepsy. I found out what happens to people with epilepsy when we have seizures; I found out about the barriers to exercise; and from my own research, I found out that, with the appropriate care in place, we can be encouraged and supported to exercise. A couple of years on, I’ve returned to a fairly similar level of exercise before I was diagnosed and I am back working in IT.

What do you think about the potential of data science to improve epilepsy treatment?

 There are many facets to epilepsy treatment that are rightly getting attention from a research perspective. However, I see the potential to bring together research areas and consolidate what has been discovered into a single set of data. Collecting, processing and joining that data may reveal yet unknown patterns that could enable improved, holistic care for individuals with epilepsy.

I work in data, and so I know this would involve collecting masses of data from different research areas. But we are living through the digital age! I have daydreamed about a utopian ‘model’ treatment plan for someone of a certain age, lifestyle and health profile that might include any number of treatments in a combination bespoke to you. Imagine if your neurology consultant could profile you and prescribe your best possible treatment, that was pretty much guaranteed to work. Not only this, but using data, a clinician could prescribe a holistic care plan too – including exercise and nutrition – tailored to your epilepsy diagnosis. The possibilities would be pretty much endless, limited only by the imagination and foresight of the data scientists and a pot of research money that would rival the budget of NASA’s manned mission to Mars!

What are your hopes for future research into epilepsy?

 Research into epilepsy gives me huge hope for the future. I think seizure prediction, to help identify when they are more or less likely to happen, would be incredibly helpful. Particularly as it would enable people to feel more comfortable exercising and going about normal daily life. I often wonder if my children will inherit epilepsy and be susceptible to seizures – more accessible testing in this area would be really important for future generations. As a person with epilepsy, I hope that research into sudden unexpected death in epilepsy (SUDEP) will make prevention a reality. I recently took part in the UK Epilepsy Priority Setting Partnership workshop, and was so pleased that this was the number one research priority.