The first recommendation in the report was that sleep should be a health priority on par with nutrition and exercise.Īaron, who's now doing his PhD on narcolepsy through Sydney Uni, is disappointed by the lack of action on those recommendations.
"I found it really hard to accept that I had a condition that wouldn't go away and I'd have to be on medication forever." 'Australia is falling behind'Ī Senate inquiry into sleep health reported back in April last year. "The diagnosis was really really hard for me," Laura said. Laura and Aaron were diagnosed after doing an overnight sleep study - similar to how people get diagnosed with sleep apnoea.īoth are managing their condition with medication, but Laura said if she accidentally misses a dose, her cataplexy can come back with force. To a 21-year old girl, that was a really awful answer to get." "The first GP I saw said, well you just shouldn't laugh. "The best description is like a normal healthy person being awake for 72 hours. That faulty switch means people with narcolepsy don't get the sleep they need at night, which means they're sleepy during the day. "In narcolepsy there's a group of cells deep within the brain that malfunction and that leads to an instability between sleep and wake." So for most of us, wake is a fairly stable state, and sleep is a fairly stable state and it's a short, sharp transition between the two," Professor David Hillman from the Sleep Health Foundation told Hack. "We've got some complicated circuitry in our brains to work the switching between wake and sleep. Narcolepsy is a sleep disorder that occurs in about every one in 2000 Australians.
It's like a weight on top of you and you're just waiting for it to be lifted so you can move again," Laura explained. Your mind races and you feel really panicked. "To me cataplexy feels like being trapped in your own body and being able to hear and think. Cataplexy is a common symptom of one type of the sleeping disorder. Laura didn't know it then, but she has a sleep disorder called narcolepsy. "Being paralysed in your own body is very very terrifying."
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