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Life with epilepsy: Nic’s story


Nic lives with epilepsy and has been a member of the Epilepsy Research Institute Shape Network for several years. Most recently, Nic has been involved with our Application Clinics, in which network members meet shortlisted grant round applicants to discuss their proposed research. Here, Nic shares how much being involved in research means to her.

My journey with epilepsy began with a sudden absence seizure. I wasn’t familiar with epilepsy at the time and knew nothing about the different types of seizures. Being diagnosed with the condition has significantly affected my life. The initial uncertainty of receiving a diagnosis and the challenges of trying to work around seizures brought on additional anxiety, stress and feelings of isolation. Being a single parent also added to this challenge.

Whilst waiting for my anti-seizure medication to work, I kept my symptoms to myself to reduce any potential domino effect they could have on other areas of my life. My seizures were unpredictable and came without warning. This meant normal tasks such as the school run and commute to work had to be carefully planned to minimize the risk of physical injuries and accidents when the seizures did happen. Social engagements also had to be more considered. Understandably, I was no longer able to drive, but this meant we lost further elements of freedom.

When I received my epilepsy diagnosis, I was keen to learn as much as I could. I also wanted to ensure the information I gathered was useful and came from an authoritative source. I discovered the Epilepsy Research Institute (then Epilepsy Research UK) and found their resources to be incredibly helpful and accurate. Through their newsletter, I discovered the Shape Network and its commitment to involving people affected by epilepsy in research. I was certain that my personal knowledge and experience would further support this crucial research and could help improve future epilepsy treatments. So, I joined the Shape Network and have now been an active member for more than two years.

I’ve been involved with the network in lots of different ways, including through Application Clinic meetings with researchers and other members. The meetings provide an opportunity for members to be involved with the Institute’s research funding process and have a say on the projects that receive funding. They are always very enjoyable and also provide opportunities for members to share their own experiences with each other.

I have found being involved in research invaluable, as it enables people with lived experience of epilepsy to play a direct role in advancing understanding of the condition and informing future research. You’re able to learn about the latest information and treatments while contributing first-hand to the collective knowledge in order to support others and their families.

My hope is for continued progress in epilepsy research to provide the best treatments and support for all patients. This will help to increase social awareness, knowledge and understanding of epilepsy to support everyone affected by the condition. It will also help provide valuable information to people unfamiliar with epilepsy, so they can be more confident in knowing what to do if they witness a seizure. Future research can contribute to providing optimal care for everyone and we can all play a role in making this happen.

If you’ve been inspired by Nic’s story and would like to join our Shape Network to radically advance research into epilepsy – find more information and sign up details here.