Living with epilepsy: ‘In college I tried to hide it but suddenly I’d drop’
Jack O'Connor urges people to become familiar with the 'Time, Safe, Stay' approach in case they encounter someone with epilespy having a seizure. Picture: Eddie O'Hare
A Kerryman living with epilepsy who had a seizure while alone in Italy is urging people to learn more about the condition so they can help their friends if needed.
Around 45,000 people live with epilepsy in Ireland with over 130 deaths annually.
Jack O’Connor, aged 25, from Castleisland, was diagnosed shortly before he started studying at University College Cork.
“I didn’t want to believe it,” he said.
“I didn’t want to hear it because that would make it real.
“I struggled to come to terms with it, that this would stick with me and wasn’t just a one-off seizure.”
While his family have been a huge support, he also relies on people around him.
“Once my friends were educated, and knew what the signs are and what happens, there’s not a lot to learn in terms of seizure first aid,” he said. “They’ve 100% supported me.”
There are different types of seizure, he explained.
He has walked into traffic during an “absence seizure” when a person becomes unconscious for a very short time but continues moving. He says:
Jack was travelling alone in Italy recently, when he had a seizure on the street triggered by disturbed sleep in a hostel.
“I woke up, I was in an ambulance and there were people speaking Italian to me, asking questions,” he said. “I wasn’t quite sure where I was, it was terrifying.”
He reflected on the “kindness of strangers to call an ambulance for me. One of the paramedics said somebody called them, somebody stayed with me”.
He urged people to learn the ‘Time, Safe, Stay’ approach.
This refers to timing a seizure, keeping the person safe and staying with them afterwards.
“So from Cork to Milan, 100% anytime I’ve had a seizure, somebody — whether a friend or a stranger — has come by to sit with me,” he said.
Epilepsy Ireland (EI) have called for a national strategy on reducing epilepsy-related deaths to mark International Epilepsy Day on February 10.
Paddy McGeoghegan, advocacy & communications manager, said “urgent Government-led action” is needed on the condition ‘sudden unexpected death in epilepsy.
Every year, 33 people die like this in Ireland among over 130 epilepsy deaths — including from injuries during seizures.
EI has worked to reduce these deaths.
“We have been able to do this because of the fundraising efforts of bereaved families, but far more needs to be done in a strategic way at a national level,” Mr McGeoghegan urged. “We know that many deaths can be prevented by addressing the modifiable risk factors.”
A key risk factor is having frequent, uncontrolled seizures. He said:
EI is hopeful of cooperation from Health Minister Jennifer Carroll MacNeill.
“We look forward to working with the new Government and all members of the Dáil and the medical community in working on these and other campaigns to improve the lives of people with epilepsy across Ireland,” he said.
For more information, visit www.epilepsy.ie.
