For our biggest fundraising day of the year, Purple Day®, Melissa has shared her experience of using the services of Epilepsy Ireland following her diagnosis with epilepsy to help encourage donations to continue our work...
It’s been nearly ten years since I was diagnosed with epilepsy. The first seizures I ever had were mostly in my sleep, but I would wake up the next morning with no memory of what had happened. I went for a brain scan, and everything showed up fine - but we all knew there was something wrong.
My parents and I were on our way into Crumlin Hospital one day for another appointment when I had a seizure and collapsed just outside - I guess it couldn’t have been at a better place or time! After spending a couple of nights in hospital, I was sent home that weekend diagnosed with epilepsy, a prescription and no clue about what the future held. Obviously, this was a shock and left me and my family wondering “what happens now?”
I didn’t really know what was going on, I just wanted to be like any other ten-year old. My family and I didn’t know much about epilepsy and living in a small village not many people did. But we knew that we would have to learn. The first thought turned to school as my school had no knowledge of seizure first aid, so my Mam went googling!
This is when she discovered Epilepsy Ireland and she promptly reached out.
Epilepsy Ireland were amazing and organised for my local Community Resource Officer to come to my school and teach the teachers about epilepsy. As I grew older, Epilepsy Ireland did the same for my secondary school teachers. In particular, they showed all my teachers how to use my emergency recovery medication. This is critically important to help stop prolonged seizures. Thanks to this training, I could attend school knowing I was safe if I did have a seizure.
When I was younger, I never knew anyone else with epilepsy. Although I knew that I wasn’t, I always felt like the only one. Until you’re in that position, no-one can really understand. That was until Epilepsy Ireland invited me to the events they organise for people with epilepsy. They organised an art camp for teenagers and that was the first time I got to meet other people with epilepsy. I remember that so well because it was the first time I ever attended an Epilepsy Ireland event.
In 2023, I was invited by Epilepsy Ireland to the International Epilepsy Congress to join a special Youth Summitt. I was so lucky to be invited and to learn so much about epilepsy. But the best part was getting to meet so many amazing people from all over the world who also have epilepsy. It felt so nice to talk to these people who can understand exactly how I feel and it’s all thanks to Epilepsy Ireland.
Epilepsy Ireland have been great for me and my family for support, information, and raising awareness of this condition. My Mam has learned so much about epilepsy from our various interactions with Epilepsy Ireland and as I have gotten older and with Epilepsy Ireland’s help and support, I have got more involved in helping raise awareness of epilepsy by sharing my story of my lived experience of epilepsy. People who know me are probably sick of hearing me promote Epilepsy Ireland’s key words of ‘Time, Safe, Stay’ when it comes to responding to a seizure!
Epilepsy is part of my life and I love raising awareness of Epilepsy Ireland and supporting their activities.
Thank you so much Melissa for sharing your experience of Epilepsy Ireland to help encourage donations. To make a vital donation to support the work of Epilepsy Ireland and our continued journey towards a society where no person's life is limited by epilepsy, click the button below.
If you need any support or information on your or your loved one's journey with epilepsy, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the 'Our Local Service' section of our website.