Jeff Mann talks to Julie Flygare, globe-hopping narcolepsy advocate, author, CEO and President of Project Sleep

Introduction

Amongst the dozens of officially recognized sleep disorders, narcolepsy is perhaps the most widely misunderstood.

Part of the reason is a simple lack of awareness.

Narcolepsy is a neurological condition, but its symptoms, which include excessive daytime sleepiness, often lead people to trivialise the disorder or blame it on lifestyle factors.

And then there’s the problem of public perception.

Narcolepsy’s most striking symptom – episodes of muscle weakness l (cataplexy), often triggered by strong emotions or sudden events – is routinely portrayed in the media as a source of amusement. After all, (the reasoning goes) what’s funnier than watching someone collapse or fall over for no apparent reason?

Living with narcolepsy however is far from a joke -It’s a lifelong chronic condition affecting millions, which, if left unmanaged, severely diminishes quality of life.

But unlike many other neurological disorders, narcolepsy is often invisible. Three factors – the social stigma of daytime sleepiness, the trivialisation by the media, and a lack of public awareness – mean that narcolepsy is commonly ignored, misdiagnosed, or dismissed out of hand.

Rising to the challenge

Julie Flygare recognized all of these challenges and decided to do something about it. Her journey with narcolepsy started when she received an official diagnosis while in law school at age 24.

Julie Flygare

Julie Flygare, author and narcolepsy advocate

After blogging about her experiences, she went on to write a successful memoir, and is now an influential public advocate, travelling the globe to raise awareness and challenge public perceptions of narcolepsy, sleep conditions and sleep health.

In an interview conducted over the phone and email, Jeff Mann from Sleep Junkies talked to narcolepsy ‘superstar’ Julie Flygare about the condition, her award-winning memoir ‘Wide Awake and Dreaming’, and Project Sleep, the non-profit organization she founded to ‘educate and empower individuals using events, campaigns and programs to bring people together and talk about sleep as a pillar of health.’

(This interview has been edited for clarity and brevity)

What is narcolepsy?

Jeff Mann (JM): Hi Julie, we’re so grateful for you taking the time to speak to us. Many people may have heard of the word narcolepsy, but may not know exactly what it is . Could you briefly explain how narcolepsy is defined in medical terms, and its prevalence.

Julie Flygare (JF): Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle. It affects 1 in 2,000 people—200,000 Americans and 3 million people worldwide.

Symptoms include excessive sleepiness, cataplexy (sudden muscle weakness triggered by emotions), sleep paralysis, frightening hallucinations while falling asleep or waking up, and disrupted nighttime sleep.

There are two forms of narcolepsy: narcolepsy with cataplexy and narcolepsy without cataplexy. Recent research suggests that narcolepsy with cataplexy is caused by a lack of hypocretin, a key neurotransmitter that helps sustain alertness and regulate the sleep-wake cycle.

More research is needed to better understand the loss of this particular neurotransmitter in people with narcolepsy with cataplexy. Less is known about narcolepsy without cataplexy and more research is necessary to understand the biological causes.

Narcolepsy misconceptions

JM: Public misconception have led some to think that ‘excessive daytime sleepiness’ is not really a genuine medical symptom. Can you explain why this perception is wrong?

Excessive daytime sleepiness could be a sign of a number of different sleep disorders or health conditions, including narcolepsy, idiopathic hypersomnia, sleep apnea, or even autoimmune conditions like lupus.

Yet, this sleepiness can be invisible and hard to detect (both to the person experiencing it and to outsiders) and there are a few reasons why this is the case.

Unfortunately, excessive daytime sleepiness can not be measured with a saliva or blood test yet. Sleepiness is often misinterpreted as laziness, late-night partying, or behavioral issues. And as a culture, we just aren’t super familiar with sleep conditions, so it’s unlikely that a parent or teacher would see a hyperactive moody child and think “maybe this is a sleep disorder.”

At the same time, the media and Hollywood use images of people falling asleep in their cereal bowl or while standing up as narcolepsy.

Yet, a large part of my personal experience with daytime sleepiness takes place with my eyes open.

So if we continue to use visual representations that equate sleeping with excessive daytime sleepiness, those facing more invisible yet invasive and dangerous sleepiness will not recognise their experience in our cultural depictions.

Furthermore, sleep conditions receive very little time or attention during an average medical school curriculum, thus many healthcare professionals’ opinions about sleep are rooted in cultural misperceptions as opposed to leading-edge scientific research.

All this leads to long delays towards a proper diagnosis, with a majority of cases of narcolepsy and sleep apnea going undiagnosed.

If you’re having trouble maintaining wakefulness during the day on a regular basis, it’s important to consult a sleep specialist.

For anyone facing invisible and hard-to-explain symptoms, my biggest advice is to leave no stone unturned in your search for answers. Work with your physician and a team of specialists to better elucidate the underlying cause(s) of your symptoms and explore the best treatment options for you.

Can you treat narcolepsy?

JM: What are the current forms of treatment and therapy for narcolepsy? Do you think it’s likely we’ll ever find a ‘cure’ for the condition?

There is currently no cure for narcolepsy and treatments for symptom management vary by person and may include multiple medications, daily naps, attention to health and a support system.

Managing this chronic condition (along with related stigmas) can have a major psychosocial impact on individuals. I’ve seen this in my personal experience and my extensive work with the community.

This is why I believe it is important that clinicians encourage people with narcolepsy to seek social support.

There are many options including getting involved with awareness and advocacy organizations, attending conferences, seeking therapy, or joining online or in-person support groups. Understanding and empowerment are key to living well with narcolepsy.

Skip to the end for a list of recommended narcolepsy resources

I’m thrilled to see a lot of drug development currently taking place so I’m hopeful that more treatment options will become available in the next 5 – 10 years. Personally, I haven’t seen many treatments for chronic conditions that live up to the cultural perception of a “cure” ie something that erases a condition all together.

“Many healthcare professionals’ opinions about sleep are rooted in cultural misperceptions as opposed to leading-edge scientific research.”

However, I’m hopeful that we will have treatments that address the underlying biological causes of narcolepsy at some point and that this will be an important step in the right direction.

In addition, I hope scientific research advances to better understand the disease development so that there may be screening and preventative strategies in place to stop the disease before it develops in certain at-risk populations.

How did you find out you had narcolepsy?

JM: Thanks for giving this background on narcolepsy. Can we talk about your own personal experiences?  How and when did you first discover you had narcolepsy?

JF: I discovered the word narcolepsy at age 23 but my sleepiness started when I was around 18 or 19 years old in college. I was a busy student and athlete, playing Division I sports, so I made lots of excuses in college for my sleepiness and didn’t know it was necessarily abnormal.

At age 21, I started law school and it seemed to get worse and worse and at the same time at I started facing other symptoms which I didn’t know had anything to do with the sleepiness.

“the next thing I remember I woke in the parking lot at law school. And I was safe and my car was parked, my seat was reclined, but I didn’t remember getting to school, pulling into the campus, choosing a parking spot and turning off my car.”

But when I was laughing at jokes my knees started buckling under me and also I started having these experiences where I thought a burglar was breaking into my apartment at night but I couldn’t move to respond.

After asking doctors about my knees buckling with laughter, finally a sports therapist said ‘I think I’ve heard of that I think that’s called cataplexy.’

So she actually wrote that word down for me and I went home and I googled cataplexy and I saw this ‘loss of muscle tone usually accompanied by emotion like laughter or annoyance or surprise’ and I realized, oh my god, that’s exactly what’s been happening to me.

And then I saw it was found in roughly 70% of people who have narcolepsy. At that time I thought narcolepsy was a joke about someone falling asleep when they’re standing up or in the middle of a conversation.

So I thought, oh I don’t have narcolepsy but when I read the real symptoms of narcolepsy for the first time, I saw excessive daytime sleepiness and that definitely resonated with me.

I was having a really hard time getting through law school with the coursework and having a hard time driving, even short distances. Plus, the cataplexy, the loss of muscle tone with emotions and then hypnagogic hallucinations and sleep paralysis.

And I realized that the further incidents I thought were happening during the night were those symptoms.

So the word narcolepsy ultimately brought together many different strange things that were happening to me under one term.

JM: Can you tell us about the driving incident you had at college that made you realize something wasn’t right?

JF: Yeah, I think one of the major incidents that happened to me in realizing that I was facing abnormal sleepiness was at the end of my first year at law school.

I was driving 15 minutes to school in the morning after getting a full night’s sleep and I remember getting off the highway and I thought oh I’m really tired, I’m not seeing very clearly.

And I thought I’m just a mile from school, but then the next thing I remember I woke in the parking lot at law school. And I was safe and my car was parked, my seat was reclined, but I didn’t remember getting to school, pulling into the campus, choosing a parking spot and turning off my car.

And that was when I felt really scared and thought this is not normal. Because, you know I had made so many excuses [about sleepiness] before – maybe I hadn’t had enough caffeine or I had too much caffeine, or it was a dark room or it was a hot room. But at the time I thought, like, I can’t drive 15 minutes in the morning –  this cannot be normal.

And so I thought maybe this isn’t about willpower or my drive to succeed or anything like that. This was like, I think I may have a sleep problem.

Facing the future

JM: So you were doing a lot of sports and you were studying law when you realized that you had this condition. What were your thoughts at the time about how it might affect your life in general and your future?

JF: Well I thought first it would be a much simpler process.

I’d never been sick with anything, I’d never taken any medications before and so I really thought of this as my ‘summer project’ you know, and once I realised I had [narcolepsy] I thought I’m going to take care of this over the summer and go back to my life as planned – and I didn’t.

I did start telling friends and family because of course they had experienced all the symptoms with me and so I finally figured out the mystery basically.

But I was also very startled by their responses that a lot of people didn’t take it very seriously or had suggestions for some sort of miracle cures – the alternative medicine type things. It was just really overwhelming so I actually kind of stopped telling people.

And for the next two years of law school I really kept it private to myself and didn’t feel that a lot of people really understood me in my life. So at first I kind of wanted to not have it be part of my life so I think I repressed it or just thought, well, I’ll handle it medically and then my life will just continue as planned, I’ll go into a big firm, you know, a law school job and that this is just going to be a little road bump (laughs).

JM: Yeah, we think we’re invincible when we’re young, that we can battle through these types of things…

JF: Definitely. I didn’t know anyone that had a chronic condition, I just had no context for something like this. But once I received my official diagnosis from the 24 hour sleep study at the beginning of my second year at law school and started to talk to my neurologist about treatments it become a little bit more clear to me that there wasn’t going to be some quick fix.

I was going to have to make some accommodations to my lifestyle – taking medication twice a night and once a day and [I would] definitely start to feel side effects. It was a much bigger impact on my daily life than I had thought it would have.

Becoming an advocate

JM: So after your official diagnosis you started blogging about your experiences. How did this come about?

JF: Well I studied rare disease drug development in law school and I became very fascinated by health law and health policy based on my experience [with narcolepsy].

I had no intentions of doing any sort of advocacy or writing about myself but when I when graduated from law school, I realized that we were as a [narcolepsy] community caught in this catch-22.

There’s a lot of misperceptions about narcolepsy and so people stay silent about having the condition and therefore not many people were helping to break that cycle of misunderstanding by speaking out about their real experience.

And so when I graduated I had this realization that someone needed to break this cycle and I did have a background in creative nonfiction from college – that was one of my main areas of interest before starting law school.

So it wasn’t completely out of the blue to consider writing a creative nonfiction memoir but it’s definitely really different than becoming a lawyer so I decided to try to do that and I moved to Washington DC and that’s when I started blogging.

Julie Flygare narcolepsy advocacy Washington Capitol

Julie Flygare (5th from left) President and CEO of Project Sleep outside the U.S. Capitol Building

When I was going to take on the Boston Marathon to raise money for narcolepsy research I thought if I put on the internet (that I was going to run a marathon) then I might have to actually run it.

But I didn’t realize at the time that the blog would reach other people with narcolepsy. I thought the blog was just for my friends and family to learn a little bit more about narcolepsy and hopefully inspire them to start donating to my fundraising.

But then I ended up reaching a lot of other people with narcolepsy and they were writing to me and saying how important the information was and so after three years of being a blogger and working on my book I ended up publishing my book in 2012, Wide Awake and Dreaming.

The award-winning book

JM: Wide Awake and Dreaming got rave reviews and received a literary award at the SF Book Festival. Tell us more about the book.

JF: Sure. Well for me I really wrote the book to open people’s hearts and minds to the condition in a different way because I think it’s really different when you have a character that you follow, if you have someone to root for and I’m very grateful that it was so well received.

Wide Awake and Dreaming - A Memoir of Narcolepsy

I think again what was surprising to me was people with narcolepsy –  that wasn’t really my target audience. My audience was to raise awareness outside of those people who have narcolepsy rather than those that already know about it but it was really gratifying to receive a lot of responses from people that have the condition saying that reading the book, for the first time they didn’t feel alone.

And so I just kept getting messages about that and realizing that so many people with this condition feel isolated and alone but I know that they’re not because I was receiving so many messages from people who have narcolepsy. And then around that same time, 2013 is when I founded Project Sleep.

Project Sleep – making sleep cool

JM: Let’s talk about Project Sleep

JF: So, Project Sleep it has a very big bold mission – to make sleep cool. And I think what makes Project Sleep special though is a little bit of what we were talking about earlier.

Julie Flygare Project Sleep

That is, really leveraging the voices of patients or people who are living with sleep conditions as a resource that can advance the greater good for the community. Whether that’s through advocacy efforts, advocating in the US for research to make sure that our researchers are able to receive funding and advance great science to better understand sleep and sleep disorders and find better treatment or raising awareness.

So we have the Rising Voices of Narcolepsy program where I’m training people with the condition on how to tell their story effectively through speaking or writing articles so that they are advocates that are able to leverage their story.

And we of course also have the scholarship program for students with narcolepsy which is a wonderful way of raising awareness about the condition, setting a precedent that it’s serious and also awarding these students, making something positive out of something that’s been a challenging part of their life.

It’s a wonderful program I’m very proud of and recently we gave out our fifth year of  awards. So, we’ve now given out 50 scholarships in five years.

A global mission

JM: Project Sleep is very much a global effort, what are the ways people with narcolepsy can benefit and/or even contribute to raising awareness?

One of our other programs is the Narcolepsy Not Alone campaign where people can submit a photo and to participate in the campaign.

We have photos from 48 countries at this point which is pretty cool and growing. It’s a really wonderful awareness tool and there’s information and resources for people with narcolepsy on that site.

I’d love for there to be a lot more ways for people to interact with projects and contribute but right now a big program that we do is  the SLEEP IN campaign, duringthere are National Sleep Awareness Week every March, and that is open to anyone that’s interested in raising awareness about sleep health and sleep disorders.

Narcolepsy not alone campaign

It’s a really fun event over a weekend where we challenge people to stay in bed for 12 to 40 hours and we do lots of different social media stuff, like we do a Twitter chat and a Facebook live with a DJ who has narcolepsy herself and she does live DJ concert in her pyjamas and it’s broadcast around the world, along with raising awareness on social media via Instagram. It’s a really wonderful campaign.

JM: Thanks so much for talking to us. Would you like to say anything else in closing?

Just this month, I finally released the audiobook version of my book, which I narrated myself. I’m really excited about having this new resource available, since many people prefer listening to audiobooks these days, so I really hope this helps the book reach more people to open more hearts and minds to narcolepsy.

Thank you for highlighting my efforts and for everything you do to improve sleep health and sleep conditions!

Resources

Download the Narcolepsy Advocacy App:
http://julieflygare.com/narcolepsy-app/

Find a Support Group in the United States:

https://narcolepsynetwork.org/resources/support-groups/

Find Narcolepsy Organizations Worldwide:

http://narcolepsynotalone.com/resources/narcolepsy-organizations/

Wide Awake and Dreaming – A Memoir of Narcolepsy Paperback/Kindle/Audiobook

https://www.amazon.com/Wide-Awake-Dreaming-Memoir-Narcolepsy/dp/0988314908

 

More Like This

Jeff-Mann Founder Sleep Junkies

Jeff is the founder and editor-in-chief at Sleep Junkies . A passionate sleep advocate, he started the site in 2012, reaching millions of readers across the globe. Jeff also runs the product curation platform SleepGadgets.io . He is often asked to speak at about current trends in consumer sleep technology at various events.