Truth about Narcolepsy - The Daily Edition featuring Julie Flygare, Narcolepsy Advocate

On Nov 25, 2014, The Daily Edition debunked myths of narcolepsy. Author and narcolepsy advocate Julie Flygare and Dr. David Cunnington talk to the team about sleep disorder narcolepsy and cataplexy. www.NarcolepsyNotAlone.com

Transcript: We all feel tired at times, sluggish and perhaps in need of more sleep.
But when you struggle to stay awake and find yourself nodding off unexpectedly, it could be narcolepsy.
It's a serious, rare disorder, affecting three million people worldwide.
A highly misunderstood condition, narcolepsy is not like what you see in the movies.
Narcolepsy is an autoimmune disorder where the brain loses the ability to maintain normal sleep and wake cycles.
Inventor Thomas Edison suffered from the disorder.
So did Winston Churchill and Nirvana frontman Kurt Cobain.
Late night talk show host Jimmy Kimmel has also been diagnosed.
Earlier this month, a US teen went viral after posting this video, in which she has a narcoleptic attack.
She's among the 70% of narcoleptics who also suffer cataplexy or sudden bouts of muscle weakness.
Experts say the condition is more common than we may realise.
So how can you tell if you're just tired or suffering from something more sinister?
For this week's Spotlight, we're joined by sleep physician Dr David Cunnington in Melbourne Thank you both for your time.
What's the difference between feeling a bit tired and having narcolepsy?
So all of us feel tired.
We all get that from time to time.
Usually we can identify something causing it, when we address that, the tiredness goes away.
The difference with narcolepsy is that the tiredness is there all of the time.
People address nutrition, health, make sure they are sleeping well, look after their mental health and are still tired day after day and week after week.
Indeed.
We also saw one of the major symptoms is cataplexy, around 70% suffer from that, it is the complete dropping all of your muscle tone, it's involuntary.
Julie, you were diagnosed when you were 24.
We have a photograph of you asleep in a Starbucks.
How old were you?
The first thing that I noticed was that my knees started buckling at a joke with a friend, it was the strangest feeling.
And that kept happening always when I was laughing at a joke or annoyed.
I also entered law school and I was having a hard time getting through my course work.
I just thought I didn't have what it took to be a law student.
I figured ute that maybe it was a sleep issue.
You don't want to walk around not laughing at jokes or getting annoyed by something that's involuntary.
What can you do about to manage itIt's very difficult.
I have to sometimes stop myself from joking and say to my friends, "I can't control it and even though I take the best treatments, I still sometimes collapse completely to the ground.
How does that effect you in every day life, can you still drive an a car?
Yes, I do.
I am very aware of when cataplexy is going to happen.
I wouldn't drive if I thought I was going to have it.
With the most part with medication, I take two naps a day, I am able to work full-time and I drive.
David, is there a profile of a typical person that has narcolepsy, does Julie fit the mould of a typical person?
In some respects Julie does.
There will be some sort of trigger that comes on maybe late teenage years, early 20s, maybe an illness.
That's followed by a partial recovery and then tiredness and sometimes the emergence of the other symptoms that we talked about, hallucinations on the boarderline of wake and sleep.
We know that 91% of primary care doctors are not comfortable diagnosing narcolepsy.
So David, if people aren't diagnosed then they can't get treatments I imagine.
There is a range of treatments.
The diagnosis is an issue.
When I see people who have had narcolepsy there is always a journey, a story of lots of different diagnosis.
That's the reason we want to increase awareness of symptoms.
Not just for people with narcolepsy but also doctors and health professionals as well.
Julie, you are passionate about raising wear bes.
What would you say is the biggest misconception about the condition?
People often -- awareness.
People think it's a joke.
It's a serious condition that's changed my life.
I like to let people know, no, this is a real disorder, it's not as rare as we think it is.
Your friends and neighbours, they have narcolepsy and that's why I founded the narcolepsy Not Alone Campaign to show the faces of narcolepsy around the world.
We have people in Australia and all over, 42 countries around the world saying I am not alone.
I'm sure that's helping people all over the world.
Julie's book Wide Awake And Dreaming: A Memoir of Narcolepsy