Life-altering condition thousands of Aussies might have without knowing
It's estimated there's some 12,000 narcolepsy sufferers out there.
Imagine you're in public alone, going about your day, and suddenly your body starts shutting down.
Your limbs turn numb and although you're standing upright, you can feel yourself rapidly losing consciousness. Before you know it, you're fast asleep.
After an uncertain amount of time passes, suddenly, a sharp cracking sound wakes you up just as easily as you drifted off. You realise your phone's slipped from your hand and smashed onto the pavement below — all while bystanders watch on in confusion.
This scenario may sound like a bad dream, but it's the reality Aussie man Harrison Wills faces every day.
Aussie man's life with narcolepsy
Mr Wills, from Wollongong on the NSW South Coast, is one of thousands of Australians who live with narcolepsy, a chronic neurological disorder that affects the brain's ability to control sleep-wake cycles. The 26-year-old retail worker was diagnosed six years ago, but has lived with symptoms for much his life.
Speaking to Yahoo News Australia, Mr Wills explains how his narcolepsy forced him to significantly alter his day-to-day life and, how the condition is frequently misdiagnosed due to the ambiguity of symptoms.
"For most people to get diagnosed, it has to be extremely severe, like debilitating sort of symptoms, just because a lot of people write it off as being tired," Mr Wills said. "They're just told to get more sleep."
A type 1 narcoleptic — a combination of both narcolepsy and cataplexy, the latter of which refers to the sudden loss of muscle function — Mr Wills said not only does he have to schedule naps throughout the day to keep him awake, he often faces paralysis during his "sleep attacks".
"The narcolepsy aspect means excessive sleepiness," he explained. "So it's not just like tiredness or fatigue — my body will just shut down on me. I'll feel tired, I'll sit down and I'll just be like, completely asleep within a couple of minutes.
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"The cataplexy aspect is loss of muscle control or sensation. So I'll go numb in my muscles and just collapse. A lot of the time they go together but my cataplexy makes it really difficult to wake up."
Mr Wills said it's "really hard for people" to tell what's happening, and he "doesn't like to fight it".
"I'll be trying to hide it and people don't really know what they're looking at. I have been in conversation before while I've been falling asleep, standing up," he said.
'Terrifying' paralysis leaves body numb, but mind alert
Often, the sleep attacks leave him alert, but in a state of total paralysis — something he says he finds "terrifying". "The cataplexy is most commonly brought on by intense emotions. For me, it's laughter. I if I find something absolutely insanely hilarious, there is a chance that I will just kind of go limp," he said.
"And in most situations when it happens I'm still awake and I just can't move, and then I'll end up falling asleep because I can't move." The paralysis, he recalled, often lasts up to 10 minutes.
Faced with limited treatment options, Mr Wills said that finally after years of being prescribed ADHD medication for his narcolepsy —which, for someone who also lives with ADHD, has been an impractical solution — there's finally hope on the horizon.
The retail worker revealed he's participating in a trial offering new medication and the results so far have been life-changing.
Do you have a health story? Contact reporter Joe Attanasio at joe.attanasio@yahooinc.com
"It's helped significantly — like, a big change. I'm currently kind of grappling with my ADHD more than I am my narcolepsy," he said, pointing to the fact that there are likely many out there who remain undiagnosed.
And — he's right.
Fresh data released this week, published in the Royal Australasian College of Physicians’ (RACP) Internal Medicine Journal, found that Australia’s healthcare system is "letting down patients suffering from sleep disorders".
The report suggests there could be up to 12,000 Aussies living with narcolepsy, many of whom won't know it. Now, experts are calling for a major funding boost to funnel into research.
Experts call for funding
"Even with current medications available, patients can still struggle to do simple, daily tasks that we take for granted," Co-author of the research and sleep medicine physician Dr Sheila Sivam said.
“Unfortunately, Australia is not offering world-class care to patients. They are often relying on outdated albeit cheaper stimulant medications that are not prescribed as a first line of treatment in other developed countries such as the EU and North America.
"Australia does not have a national data registry that will help identify exactly how many people are suffering — this means we don’t know exactly how many people are impacted by narcolepsy, so there's very little incentive for the marketisation of diverse treatments.
"We can only rely on global prevalence of narcolepsy which indicate between 25-50 cases per 100,000.”
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