Perth teen fights rare disorder that makes him constantly fall asleep
A Perth teenager is battling narcolepsy, a rare disorder that makes him suddenly and constantly fall asleep.
16-year-old Thornlie teenager Ethan O'Dea says he feels like he hasn't slept for three days - all the time.
His case is so severe that it's dangerous for him to be left alone.
Leaving the house is a struggle but doctor's appointments are essential given his condition.
It's been four years since he last went to school.
Ethan's mum started to notice something wasn't right when he was about ten years old.
"He would fall asleep doing anything," she said.
"He would fall asleep getting dressed in the morning and the potential was he'd fall off his bed.
"He's fallen asleep eating his breakfast in the chair."
On average, Ethan sleeps around 15 to 16 hours a day but has sometimes slept for 21 to 26 hours in a row.
"Talking to someone just for a few minutes tires me out," he said.
"Being in public by myself, even that tires me out."
For years Ethan went from doctor to doctor.
Some thought he was faking it to get out of school, others thought he was depressed.
"I can't have a social life barely ever," he said.
"I can't hang out with people. It's been tough."
Narcolepsy isn't about falling into a deep sleep.
Ethan's sleeping consists of constant REM or rapid eye movement, which means he never gets the deep sleep that most people do.
Nobody knows why, and there is no cure.
"I see many patients with different sleep disorders who have really suffered," sleep specialist Dr David Hillman said.
"When you're sleepy you're not really living, you're existing."
Ethan is on a lot of medications, including one that has until recently been illegal.
Xyrem is considered dangerous but it is the only thing that gives Ethan restful sleep.
It costs about $500 for a bottle that lasts a month.
"It's actually the same chemical compund as GHB, the date rape drug, so because of that it's highly monitored for safety and security," Ethan's mother said.
"What it does to a person is it basically knocks them out almost to the point of unconsciousness."
For Ethan's sake the risk is worth it - he's the first person in WA to put on a Xyrem trial which could help give him his life back.
