For International Epilepsy Day 2026, Zuzanna has reflected on her journey with the condition with an important message to people living with epilepsy and the public alike….
I was 14 years old when I was first diagnosed with epilepsy – and it’s been part of my life for over a decade, as I’m 24 now.
I experience both absence and tonic-clonic seizures and I am currently on a combination of anti-seizure medications, each with their own side effects, that I know many people living with epilepsy are familiar with!
Growing up as a teenager with epilepsy, and now living as a young adult with epilepsy, I have faced many challenges that may seem small to some people - but are life changing for me.
Things like seeing people around you get their driving license gives you a smack of reality that you legally can't do that until you're a year seizure free. As happy as you may be for them, that little bit of sadness is there too if you haven’t hit that one-year seizure free milestone.
For me, my seizure triggers are stress, lack of sleep, and missed medication. I need to make sure I have my medication with me and get enough sleep, otherwise I can be paranoid about having a seizure and hurting myself as a result – or even worse.
We know life can be stressful at times, so when stress is a trigger for me, I’ve tried to learn to control and manage the situation as best I can. It can be stressful as well thinking that a seizure can happen at any time and I am aware of things like Sudden Unexpected Death in epilepsy and I know that, unfortunately, some people have lost their lives due to a seizure related injury. It is a reality of epilepsy, but its important to be aware of these realities and for me, I try to limit my triggers and know my limits in order to become seizure free. I don’t want epilepsy to control my life.
On three occasions, I have been seizure free for over a year. The latest streak ended in December, when I was 1 year and 9 months seizure free. I now find myself at the beginning – again – but I am determined to keep fighting, get seizure free again and to keep spreading awareness.
I want the wider public to know that epilepsy is way more common that they think – there’s more than 45,000 of us across the country. I also want them to know that it’s not just about flashing lights. I want them to know how important it is to know seizure first aid and those key words of TIME, SAFE, STAY and I believe that every school and workplace should know this information. I fully support Epilepsy Ireland’s Seizure Safe School campaign and hope that it will become a reality and make life so much different for future generations of children with epilepsy.
We – people with epilepsy – feel deeper, think deeper and experience life from a different perspective. I can’t stress enough to you, that if you learn a bit more about the condition we experience, it can help us on our individual journeys with it – so please do learn more.
For others living with epilepsy, I’d like to share my own perspective of life with the condition. Epilepsy has taught me how to take control of my life and to make the most of every moment, because we all know how things can change in an instant. Don’t let this condition determine your life.
Thank you for reading my story.
Thank you so much Zuzanna for sharing your story as part of our awareness raising activities for International Epilepsy Day 2026 – we really appreciate it.
To follow Zuzanna’s advice and learn more about epilepsy visit the ‘Epilepsy Information’ page on our website.
Further Information
- If you have been inspired by Zuzanna to share your story for International Epilepsy Day 2026, please contact our Advocacy & Communications Manager, Paddy McGeoghegan by emailing pmcgeoghegan@epilepsy.ie
- To see how you can get involved in International Epilepsy Day 2026 by hosting an engagement stand in your local community, visit the 'Raising awareness for International Epilepsy Day 2026' page on our website.
- To learn more about seizure first aid and the key words of TIME, SAFE, STAY, visit the 'Seizure First Aid' page on our website.
- For more information on Sudden Unexpected Death in Epilepsy, visit the 'SUDEP' page on our website
- To learn more about our Seizure Safe Schools campaign, visit the 'Advocacy' section of our website
- Should you need any information or support about your or your loved one's epilepsy, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the ‘Our Local Service’ page on our website.