For National Epilepsy Week 2026, our media volunteer Julia has reflected on her experiences with epilepsy, sharing how her attitudes to the condition has changed and a message for others living with epilepsy...
I was diagnosed at 15 with Juvenile Myoclonic Epilepsy. My seizures include loss of consciousness with falls and muscle jerks, brief lapses in awareness, and involuntary muscle twitching.
After trying several medications, I found one that worked and was seizure-free for many years, which gave me confidence and a sense of normality. However, as I got older and started a family, my epilepsy changed. Treatments that were once effective became less reliable, and I began experiencing seizures again, impacting my daily life and routines.
I am currently working with my neurology team to find a treatment that better manages my seizures, and I remain hopeful of regaining stronger control.
Living with epilepsy has taught me to accept uncertainty. The trial-and-error nature of treatment can be challenging, particularly when things change over time.
As a teenager, I hid my diagnosis to avoid feeling different. Now, in my late 30s, I take a more open approach, ensuring those around me understand how to support me. I also engage with Epilepsy Ireland through research participation, sharing patient perspectives with medical professionals, and helping to raise awareness so others better understand the condition and how to respond.
I would encourage people with epilepsy, and their loved ones, to connect with Epilepsy Ireland for trusted information, guidance, and support in navigating the complexities of the condition.
Thank you Julia for sharing your story with us. If you need support on your or your loved one's journey with epilepsy, do not hesitate to get in touch with your local Community Resource Officer. You can find their details in the 'Our Local Service' section of our website.
Further Information
- For young people living with epilepsy, we have a Young Epilepsy Programme. Learn more by visiting the 'Young Epilepsy Programme' page on our website.
- Julia was part of the EpiKNOW project which created a range of resources for women with epilepsy from preconception to postpartum. Visit the 'EpiKNOW' page of our website to learn more and download the resources.