We would like to say a huge well done and thank you to Joar Ryan who completed the Dunboyne 10k in support of Epilepsy Ireland on Sunday 23rd March - to raise awareness of epilepsy and raise funds for Epilepsy Ireland in advance of Purple Day®.
In advance of completing the run, Joar shared his story of life with epilepsy and why he decided to take on this challenge which you can read below...
My life with epilepsy began when I was diagnosed with Infantile Spasms at nine months old, which led to a diagnosis of temporal lobe epilepsy when I was three.
As a small child, my seizures did not respond to medication. I could have hundreds of seizures a day. Luckily, I was a candidate for surgery and had a temporal lobe resection in 2012 when I was just four years old. After the surgery I was seizure free for eight years and was even taken off medication. I called myself the luckiest child in the world, as it is not the norm for epilepsy surgery to be performed on someone so young – and a medical panel had to approve the surgery before it could go ahead.
When I was 12, my epilepsy returned – this time with tonic clonic seizures. My medications do manage my seizures quite well, but I’d still experience a couple of breakthrough seizures a few times every year. Alongside that, the side effects from the medications can leave me feeling quite tired.
As a young person living with epilepsy, I do feel like the diagnosis of epilepsy has affected my life both positively and negatively. In a positive way, Epilepsy has become part of my identity - especially this year with being in transition year, because I have been able to speak about it openly as part of class talks with Epilepsy Ireland and it has helped to normalise the condition with others.
However, epilepsy has also had a negative impact on my life. For example, it was a struggle during my junior cycle in managing the stress with exams; and stress is a seizure trigger for me. There are also the other challenges that are there - for me, some of the most challenging aspects of living with epilepsy is the unpredictability of when a seizure will occur, my short-term memory and tiredness caused by my medication.
Despite the negatives and challenges that can and will be there, I still would consider myself very comfortable in telling my peers about my epilepsy. It’s important as they know what to do in the event of me having a seizure – and in a general sense, they now know so much more about epilepsy by me speaking to them.
Generally, everybody is different when it comes to living with epilepsy and everyone has different triggers and experiences with side effects from medications. Everyone also lives with the condition in a different way and can go through their own unique difficulties.
For me, living with epilepsy means that I need to feel healthy mentally and physically. Being open about the condition is a key part of that.
I really enjoy Teen Time from Epilepsy Ireland, which I find very useful and enjoy meeting others with epilepsy my own age.
I now know I must get a great night’s sleep every night; I need to have a good nutritional diet– and that I need to get good exercise in as well.
That is why I decided to run the Dunboyne 10K – as it combines a lot of the above. It also allowed me to raise awareness of epilepsy and helps support the work of Epilepsy Ireland, who I know are great at supporting people who are living with epilepsy.
My fundraising page is still open and every donation no matter the size would be very much appreciated and thank you for reading about my journey with epilepsy – I hope that it has helped someone out there who is also on their own journey with the condition.
Having set out to raise €500, Joar's fundraising page on Eventmaster currently stands at over €2,500 - if you would like to add to that amount, you can do so via the button below which will lead you to Joar's fundraising page.
Joar is not the only incredible supporter we have this week - with hundreds of people across Ireland signed up to take on our 24-Hour Squat Challenge - you can see some of the incredible efforts taking place by visiting our Funraisin platform.
Thank you Joar for your incrfedible support for Epilepsy Ireland!