The family of a young woman who died after an epileptic seizure has said there needs to be more awareness of Sudden Unexplained Death in Epilepsy.
Louise Young, from Co Wexford, was just 24 years old when she died of SUDEP in January 2021.
She was found in bed at home by her sister Katie after having a seizure and was classified as a case of SUDEP.
"You don't understand the devastation of someone being there one minute, and gone the next," her mother Tina said.
She explained how Louise was first diagnosed with epilepsy at the age of three after blood tests and hospital checks and was put on medication.
"After this, she was good and would only have maybe a couple of seizures a year," her mother said.
In her teenage years, Louise was described as social butterfly, who liked swimming and guides and did not let her epilepsy define her.
"She loved going out and about and it was the same when she was older, she definitely was not sitting around doing nothing," her mother explained.
Louise was eventually able to be taken off medication and was seizure free from the age of nine to 17.
But in her Leaving Certificate year, she experienced another seizure.
"When she had a seizure at 17, it was a big shock for Louise and the family. This was Leaving Cert year and there were no signs of anything running up to it," her mother said.
Louise had to undergo more tests to find the right medication.
She went on to do a BA in Media Studies at Maynooth University and also worked in Chicago and London.
"She was making the most if her life. Louise was a determined girl," her mother said.
The family explained how Louise was also a big advocate for epilepsy awareness and would tell people not to be afraid of the illness.
On the day of her death - 8 January, 2021 - her mother said Louise seemed fine and had been working from home.
But, she said, she must have felt a seizure was coming and had got herself into a safe position in bed.
"She had seen her neighbour at the window and they had waved at each other at 6pm. When her sister Katie came home about 20 minutes later Louise was on the bed and she had passed away," Tina said.
"We are trying to continue on what Louise has left. SUDEP is an aspect of epilepsy that many people are not aware of. We need to get greater awareness of it. It is important that people take their medications and keep themselves fit and well during their epilepsy days," her mother said.
Tina said that her daughter's legacy is to live every day and get on with life.
33 epilepsy-related deaths in Ireland each year - study
Around 33 people in Ireland die each year from Sudden Unexplained Death in Epilepsy, the first Irish study of its kind has found.
It affects more men than women and most of those who died were found in bed.
The age at death ranged from nine to 81 years.
The study looked at 2019 and it found that SUDEP was mentioned on death certificates in just 52% of cases.
Epilepsy Ireland has called for greater awareness of SUDEP and improved early access to specialist care and treatment for epilepsy.
This research was conducted by Yvonne Langan, Department of Neurophysiology, St James's Hospital, the Department of Clinical Medicine TCD and with the support of the Health Research Board.
SUDEP is defined as sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in an individual with epilepsy, with or without evidence for a seizure and excluding documented status epilepticus, where a post-mortem examination does not reveal a cause for death.
Epilepsy Ireland has described it as an incredibly important study in terms of understanding SUDEP in Ireland and communicating with people affected and their families.
Paddy McGeoghegan, Advocacy and Communications Manager with Epilepsy Ireland, said that up until now, there were only international statistics available on the prevalence of SUDEP.
Mr McGeoghegan said that the total number of epilepsy-related deaths here is estimated at around 130 a year and that a national strategy is needed from the Government.
He said that along with SUDEP, people with epilepsy can die from seizure-related injuries, drowning and prolonged seizures.
He said the work of creating awareness and research cannot be left to the fundraising efforts of bereaved families.
Epilepsy Ireland wrote recently to Minister for Health Stephen Donnelly on the issue.
There are 45,000 people with epilepsy in Ireland.
Previously the incidence of SUDEP has been studied in a small geographic area.
This new study looked at all deaths referred to coroners in 2019 and the research work will continue.
It said that correct certification of deaths in people with epilepsy is vital to allow accurate data on SUDEP and other epilepsy-related deaths to be collected and for the monitoring of trends in mortality.
Today is SUDEP Awareness Day and Epilepsy Ireland is calling for greater awareness of the issue.
People with epilepsy have a mortality rate two to three times that of the general population.
The new study has been published in the European Journal of Epilepsy.
