In this story shared with us for #EpilepsyDay 2023, Ciara from Cork outlines her journey with epilepsy so far...
I was diagnosed with epilepsy when I was nine years old. My first seizure came upon me one morning. I woke up, not knowing who my family were. The previous night, I had travelled with my mother to pick up our new puppy (a big moment for a nine year old!) and that morning I couldn’t remember where this little guy had come from!
It was strange and we didn’t really know what had happened but 10 days later, everything became a bit clearer when I had a full tonic-seizure in front of my grandparents.
After all sorts of tests, I was officially diagnosed and my journey with epilepsy began.
My seizures were aggressive throughout my teenage years. Going to the hospital a couple of times a month was the norm.
One seizure that I had when I was 19 always stands out in my memory because how serious it was. I was having continuous seizures with one going into another and was unable to breathe, and had to be placed in an induced coma.
As many people reading this will know and will have experienced, my medication was changed several times to try and find a medication that would control my seizures – but they still unfortunately remained quite active despite the best efforts of my medical team.
This was when surgery was first mentioned – which was of course scary, but I wasn’t responding to medication and my team believed that it could be an option for me, so I decided to go the surgery route.
As I share this piece with you today, I am five years post-surgery, I am in a much better place. While my seizures haven’t fully gone away, they are 99% better than what they were. I don’t see the inside of a hospital as often as I did and having less seizures makes me feel a lot safer and has given me greater peace of mind and confidence about my future.
I know my journey with epilepsy is a continuing story but as I look back, I am so grateful for the love and support of my family throughout my journey so far – and for my medical teams who have supported me every step of the way and got me to where I am today.
One reason I wanted to share my story as part of the lead up to International Epilepsy Day was to let others with epilepsy know that even when it might not seem like it, things can get better and epilepsy does not have to hold you back socially, educationally, and professionally. I know stigma still exists around epilepsy but the only way to overcome this is by speaking out and helping educate others and encouraging them to learn more!
Thank you Ciara for sharing your story and helping to create awareness of epilepsy and increasing understanding. For everyone reading, you can learn more about epilepsy by visiting the 'Epilepsy Information' section of our website - and please ensure you make Time, Safe, Stay part of your general knowledge as part of #EpilepsyDay 2023! Visit the 'International Epilepsy Day 2023' section of our website to do just that!