When I was younger, I experienced around four seizures a month, mostly as I was falling asleep. I was prescribed Phenobarbitone and Phenytoin — common medications to treat epilepsy at the time.
Epilepsy affected both my social skills and learning development, and the impact of this became more obvious to me later in life.
In primary school, the staff were aware of my epilepsy and made sure that I understood what was being taught. My learning development improved during those years but this progress was quickly undone when I moved to a much larger secondary school. No one knew about my epilepsy, and I struggled to keep up.
My epilepsy had a significant impact on my attention span and my memory. Without the same support that I received in primary school, I fell behind my peers to the extent that I failed all my exams and my school leaving report was far from complimentary.
Throughout this period, I also found it difficult to make friends. It became easier in my teenage years as my cognitive ability improved and I developed learning strategies to improve my social skills. However, looking back I believe epilepsy affected my cognitive development. Even now, I sometimes struggle to find the right words and don’t have the detailed recall of specific events that my peers seem to.
It wasn’t until 2016, when my seizures started to increase to around seven a month that I was referred to a neurologist for the first time. Over the next few years, my medication was changed from Phenobarbitone and Phenytoin to Levetiracetam and Lamotrigine, which are more widely used today. This change made a huge difference – I felt less drowsy, had more energy, and my seizures became less frequent and shorter in duration, compared to 25 years ago.
For the first time, I was introduced to support groups, where I could share my story and connect with people like me, who live with epilepsy. In 2019, this started my journey with Epilepsy Action, and I soon became a research volunteer and subsequently found the Epilepsy Research Institute and its Shape Network. Both organisations have had a significant impact on my life. They connected me with people who understand my journey, and just as importantly, they gave me a platform to help shape epilepsy research.
I am really heartened to see the number of studies being carried out and the consequent progress in epilepsy research over the years.
I feel privileged to be able to contribute to this important work, as a member of the Shape Network.
My own journey demonstrates why research into Advanced Therapeutics and Disease Modification is so important. The development of new and improved anti-seizure medication has greatly improved my quality of life and further research has the potential to make a real difference for others living with refractory epilepsy.
