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27/10/2021

'Narcolepsy is not funny or contagious' - Laois boy speaks out about his brain condition

'Narcolepsy is not funny or contagious' - Laois boy speaks out about his brain condition

Dara Bray Egan outside Portlaoise College on World Narcolepsy Day

A Laois teenager has revealed how he is living with a serious brain condition, to raise awareness and urge people to take it seriously.

Dara Bray Egan is a 5th year student in Portlaoise College who is living with narcolepsy and cataplexy.  

On World Narcolepsy Day Wednesday, September 22, he has opened up to tell his story. 

"When I was four years old I began having symptoms of narcolepsy from falling asleep after school to not being able to stay awake on car journeys. When i was eleven my symptoms began to affect my school work and had to attend Temple Street hospital for tests.

"I was finally diagnosed with narcolepsy and cataplexy after several sleep study tests and a lumbar puncture," he said.

Narcolepsy is a chronic neurological condition which occurs when the brain cannot control the sleep/wake cycle.

"It greatly disrupts my daily life due to the excessive daytime sleepiness. It causes sleep paralysis, hallucinations, disrupted sleep and affects my concentration.

"Cataplexy is the sudden and brief loss of muscle tone and strength. It is triggered by strong emotions such as laughter, embarrassment or stress. I am fully conscious during an attack but i am unable to talk. Cataplexy attacks last from several seconds to minutes. The severity of the attacks can vary from minor weakness to the loss of all muscle control.

He said that staff at Portlaoise College are supportive and understanding.

"My daily routine consists of medication and scheduled naps. Naps are not always possible and has to be worked around a school timetable. This is where the school needs to be flexible in accommodating my needs with subject exemptions and a room to sleep in to allow me to focus on my most important subjects.

"Portlaoise college has used this day to raise awareness and educate the teachers and students and give a better understanding of my condition. All this would not be possible only for my year head Amanda Cripps who has been so supportive and understanding. My school life would be very difficult and i would be struggling without her support."

Dara says that his condition has been laughed at and wrongly portrayed in video games or movies

"Narcolepsy is not funny or contagious. It is not like how it is portrayed in the movies. It shouldn't be used as a modifier in the game Mortal Kombat . Narcolepsy is a serious brain disorder and should be treated accordingly.  I've had to come to terms with the realization of how narcolepsy and cataplexy has and will affect me for the rest of my life," the student said.

His mother Jacqueline Bray is proud of Dara's effort to raise awareness on World Narcolepsy Day.

"I couldn't be more proud of him," she told the Leinster Express.

Narcolepsy Ireland is asking people to show their support today by printing out their bright poster shown by Dara, available on their website and taking a photo of yourself with it and either share at: info@narcolepsyireland.com or on your own social media using #worldnarcolepsyday #narcolepsyireland

See www.narcolepsyireland.org

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