To raise awareness of epilepsy and raise funds for Epilepsy Ireland in advance of Purple Day®, 16-year-old and person with epilepsy, Joar Ryan, will be taking on the Dunboyne 10K!
This is the latest effort to raise awareness from transition year student Joar, having spoken recently to his school about his journey with the condition as part on an Epilepsy Ireland information session.
These are not Joar’s first efforts to raise awareness of epilepsy either – as some of our more eagle-eyed supporters may recognise Joar from an awareness campaign with then Ireland Head Coach, Joe Schmidt – from all the way back in 2014!
As part of his fantastic ongoing efforts, Joar has shared some of his story with us to help raise awareness of the epilepsy, which you can read in full 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 sign up for the Dunboyne 10K – as it combines a lot of the above. It also allows 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.
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.
Thank you, Joar, for your support and we look forward to seeing your pics from the finish line of the Dunboyne 10K! If you would like to support Joar’s efforts by making a vital donation, you can do so via his Eventmaster fundraising page on the button below.
If you have been inspired by Joar’s efforts to raise funds for Epilepsy Ireland this Purple Day®, you can find out more about you can help support our fundraising efforts by visiting the Purple Day® page on our website – or by signing up to take on our 24-Hour Squat challenge. Find out more about this by visiting our Funraisin platform.
If you or your loved one need any support or information regarding epilepsy, regardless of what stage you are at on your respective journeys with epilepsy, please do not hesitate to get in touch with your local Community Resource Officer. You can find their details by visiting the 'Our Local Services' section of our website.