Why epilepsy research is crucial

Torie Robinson
ERUK Scientific Advisory Committee Member
CEO Epilepsy Sparks

Torie Robinson is the CEO and founder of Epilepsy Sparks and an expert by experience on Epilepsy Research UK’s Scientific Advisory Committee. Here she discusses the importance of scientific research into epilepsy and how the projects ERUK fund provide help for today and hope for tomorrow.

Research into epilepsy gives me hope. My hope being that we will have such an improved understanding of the human brain that we shall be able to provide more effective and preventative treatments for the condition. Meaning, improved lives for the millions of people affected all around the world.

Currently, there are antiepileptic drugs (AEDs) that are pretty good for some people with epilepsy, fully controlling their seizures and with minimal side effects. But some drugs are less successful for others – not controlling the seizures and often causing a number of horrid side effects.

Around 70% of people with epilepsy have their seizures controlled by AEDs or treatment, but many have to sacrifice their quality of life due to unpleasant side effects. For the remaining 30% of those with refractory (uncontrolled) epilepsy, life can be, well, very tough.

We want and deserve to live without seizures, drug side effects and/or having pieces of our brains removed. We need treatments that do not leave us feeling doped up or damage our cognitive function. We deserve to be able to plan our lives more effectively, to not worry about having children (if that is our choice), to not feel so low, to have more independence, to not have to worry about SUDEP, to have more energy, and to have more choices in life. We do not want the people who love us to be worried or upset all the time. We just want to be free.

But the way to turn things around, I believe, is to look at things from the scientific perspective. Look at the research that is being done; it is truly exciting. This is where Epilepsy Research UK (I’m smiling just typing the name!) comes in full throttle.

Research into epilepsy gives me hope that we will be able to provide more effective, and even preventative, treatments.

Research funded by ERUK is identifying not just correlations, but causations of abnormal and dysfunctional neural activity. Research provides us with data that enables us to more effectively predict and prevent seizures long-term.

This research provides a clearer understanding of abnormal neural activity, which little by little, enables development of treatments that can improve and save lives.

When I joined the Scientific Advisory Committee (SAC) of ERUK as an expert by experience I was excited; primarily because of the hope that research gives those affected by epilepsy. Nearly a year later, I’m even more passionate about all of the work we are doing! I confess that I tend to leave the SAC meetings with an aching face from having smiled too much.

Everyone on the SAC is so very warm, caring, respectful, modest, and passionate about their work; doing their best to better the lives of the millions of us affected by epilepsy. The SAC and ERUK as a whole have always sought out and sincerely valued my thoughts, opinions, and what I would personally prioritise when it comes to epilepsy research. We, people with epilepsy; have a voice.

I have a great reason to read papers (although require a neuro/lab thesaurus – thank you Caoimhe!) and relish being let into secrets of potential future epilepsy research!

Unfortunately for many of us, our epilepsy, a condition with high levels of societal stigma, is often accompanied with other stigmatised conditions such as anxiety, depression, psychosis or schizophrenia. The SAC is fully aware of how common mental illnesses are amongst those of us with epilepsy. They recognise that mental illnesses can be, at times, even more impactful than the epilepsy itself. They know that a common side effect of some AEDs can effectively equate to a new diagnosis (mental or/and physical). They know that we need to make lifestyle choices every day that no one else must.

Truthfully, no one fully understands what each person with epilepsy is going through; each brain is of course unique. But we must know that the best of the best researchers and academics at ERUK, more than acknowledge this, are dedicating their lives to changing our worlds for the better. I don’t know about you, but when I think about this it makes me smile. A lot.

-Torie Robinson

Want to hear more on the important work the SAC does? You can read our previous blog Why we have a Scientific Advisory Committee. Why they’re important. And why you should care.. here.

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