Hi everybody and welcome to episode two of Airway First,
podcast from the Children's Airway First Foundation. I'm your host, Rebecca Basma.
I guess today is Emma Cookey, podcast host, writer, speaker, and one of the estimated 22 million
diagnosed American adults suffering with obstructive sleep apnea. Through her weekly podcast,
Sleep Apnea Stories, Emma not only shares her journey, but she's also become a champion for
others suffering from obstructive sleep apnea by breaking down sleep apnea stereotypes and
raising awareness of both symptoms and treatments. Earlier this week, I was lucky enough to have
the chance to sit down and talk to Emma about her personal airway journey and her life now as a
podcaster and patient advocate for sleep apnea. So I know everyone has a unique story. For those
of you who don't know Emma and haven't ever heard her story on her podcast, you can check it out.
There's an episode where she explains it. We've also promoted a very short video on our social
media where she gets into it. Go ahead and if you would just share a little bit about your story
about how you found out that you have an airway disorder. Okay. So as a child, I had huge tonsils.
I called them grade four. They were pretty much touching at the back of my throat. But I grew up,
I'm in my 40s now. So I grew up in an era in the UK where they had swung from everybody having their
tonsils removed to no one having their tonsils removed. So in order to get your tonsils removed,
you needed to have a certain number of infections. Like people say, start here, we say tonsillitis.
I would always have three a year and they wanted me to have four. So clearly I was not
really that well and constantly having problems with my tonsils. I also had terrible allergies.
But at the time, I had a big allergy scratch test on my back and my allergy to horses was so
pronounced that we found out because I was like going to ride on a donkey at the beach and ended
up in the hospital not able to breathe and everything. And so at that point, it was more like,
how do we manage that? We're going to stay away from horses. But there was no the kind of things
that are available now. I don't think we're really available then. I don't think like it certainly
was a conversation to take me to an allergist or any of that. So I had all these problems which now,
in retrospect, I also was a mice breather because of what I had going on with the allergies and the
tonsils. And I definitely went through my childhood, mice breathing all the time, could not breathe
through my nose. Nobody ever mentioned that it was a good idea to breathe through your nose.
I know that you know where this is going. So then as a teenager, I had four teeth extracted
and I had retracive braces for almost three years. And then, yeah, and I just never really felt
well again after that process was done. It left me with a very small, you know, I already had a small
and my and a narrow high arch palate and all these things. But nobody mentioned that there was
anything wrong with that. So I just always felt quite tired. But I think that during my teenage
years, I, you know, could explain away with like I'm doing a lot of stuff in high school and I'm
busy and staying out later. Maybe that's why I'm quite tired. Oh, yeah. Right. Then I started
university. And I was at university for four years. And during that time, I was always exhausted.
And I would go to like lectures at 9am in my pajamas and stuff like that. But of course,
like I went to university in Scotland, where I mean, probably like any college, right? Like
everybody's going out drinking all the time. And so a lot of it could be explained away by I feel
terrible, but then I have been out really late and all these things. Right. So then after university,
I spent a year traveling. And so I went to Thailand and Malaysia, then to Sydney in Australia. And I
worked in Sydney for about six months. And that's when I really started thinking like there's something
wrong with my health. Like I couldn't bounce back like all my friends, I was working a lot of my
friends had jobs in bars. And I ended up and with a job working for a big law firm and a commercial
litigation department where which was lucrative. So it was good for backpacking because, and you
know, I was already planning what I was going to do after those six months. So but I started crying
every morning in the shower, like every morning. Just for the question. Yeah, just feeling like
when I woke up in the morning, I felt like I hadn't even gone to bed the night before. And I
definitely had a whole bunch of anxiety. And I would wake up with a pain in chest all the time.
And really had every classic symptom of sleep apnea. So pain in chest all the time, multiple
waking up at night, using the bathroom lots of times at night, morning headaches, and depression,
anxiety. I mean, just pretty much every symptom. Right. So I hadn't really
just because I was traveling, I hadn't really taught to any doctors. Like I was starting to
think there's something not right, but I hadn't really taught anybody about it. So then when I
got back to Scotland, I was working in Glasgow and I went to see GP there. And at that point,
I kind of said like, this is all that's going on with me. And, you know, mainly I feel terrible.
And, and he did like all the blood work and all the stuff. And, and came back and just was like,
good news, there's nothing wrong. Like we can't find anything wrong. And, you know, it's probably
just stress to like, you know, early 20s, you're probably stressed. So that was kind of became,
I mean, it's not funny because it's my life, but it's almost funny in retrospect, because over
those, and all of my 20s, I went to the doctor at least once a year to say, I feel terrible. I'm
so exhausted. I feel anxious all the time. And so I kind of, you know, was treated for anxiety,
but nobody really got to the root of why I was feeling that way. So every time I would go,
they would say, you're really stressed because of what you have going on in your life, or,
and then, so I should just say, just so nobody gets confused at the age of 30, I'd gotten married
to my husband, he was from the United States in Scotland. And then we moved to Florida when I was
30. And I got pregnant right away with my first daughter. So then I would go to the doctor and
they would say, Oh, you're tired and anxious because you're pregnant. And I would be like,
I don't feel like I'm going to itch. I was so nervous. And then I, you know, they said,
we'll see what it's like, you know, after the baby comes and all that. Well,
of course that disrupts your sleep. But my daughter like started sticking to the night,
like maybe six months old. And I still felt horrendous. I was so napping, like,
you know, every time she napped, I did all the things, but I was still exhausted. So I went
back and they said, you have a young child. That's why you're tired. So years and years,
I've just never gotten to the bottom of what happened. So then I was 30 with my daughter was,
it was actually like no joke, like a week or two weeks after I'd been to the doctor and they said,
you're just tired because you have a newborn. And I took Katie to go see my mother-in-law.
And she lives about 40 minutes away. And we were driving home across the Buckman Bridge
here in Jacksonville. And I just had that feeling that people have, you know, like driving where
you have an intense, I'm going to fall asleep. Like my eyes were just closing and it was really
it was really scary. And I just was focusing on this truck. I was on like a four lane bridge
filled with traffic and lots of trucks. And I just started thinking like, I'm going to hit that truck
in front of me. And so a cat focused on the license plate. And then I had that momentary,
like I fell asleep at the wheel. And then the next thing I knew, this like slow motion license
plate of the truck in front of me was coming towards me, like kind of slowly, but also fast.
It was like the rain just saying, and I slammed on my brakes. And we didn't hit that truck by some
miracle. Like it was just, I still am like, you know, astonished because it really, I had to
brake so hard. It made like a really terrible noise. And so then when I got off the bridge,
I pulled over and I mapped for like 20 minutes just to kind of take the edge off. And then I
drove home. And at that point, I just gave the baby to my husband. And I said, like, there is
something wrong with my sleep. And I didn't even really know like what a sleep study was or anything
about it. But I called back that doctor who had just said, I'll all be fine. And I said, there's
something wrong with my sleep. I just, you know, I fell asleep at the wheel and I almost got in
a really serious car wreck. So at that point, they said, okay, maybe you should go and have a sleep
study. And so I had a sleep study. And I think at that point, I just kind of was like, you know,
I felt I just knew nothing about it. So I felt like sleep disorders or something really foreign
that hardly anybody has. Right. Older people. Right. Older people. And I don't even think
I'd ever heard of sleep apnea, to be honest. So I had that test done. And I went to get the results
and they said, you have obstructive sleep apnea. And we're going to give you a CPAP. And I was like,
why do I have obstructive sleep apnea? And they said, Oh, you know, lots of people have it like,
you know, they were kind of surprised because they weren't used to seeing young, like, you know,
women who weren't overweight and that kind of thing. So they were like, yeah, strange thing,
you have sleep apnea. But then they were like, well, people have it for different reasons. And
sometimes it's hereditary. And I'm like, my parents don't have this. Like, I don't know. Yeah. So I
kind of left with more questions than answers. But I also, you know, was the mom to a young baby.
So I just was like, fine, if I need to do the CPAP thing, let me go home and get on with it.
Because I have to like, you know, feed my baby and do things I have to do. And so then,
yeah, so then I like a lot of people I struggle with CPAP. And it probably, you know, it took me
about maybe like a year to really figure out so I could light these in the CPAP all night and
all that. Then I pretty much just got on with my life and used CPAP for 14 years. And then
I get confused about the set for a while, I was saying 12 years, but I've been saying that for
three years. I think I think it was so to take me to, I think it was 13 years to take me to
the summer of 2020. Okay. And then summer 2020, I started my podcast sleep apnea stories. And a
lot of that was to do with just trying to connect with other people who have sleep apnea and maybe
you're looking for answers as to why they have sleep apnea and trying to, you know, kind of resolve
the underlying issues rather than, you know, just doing CPAP forever kind of thing. Although I was,
I was, you know, I'm still doing CPAP. I've been doing CPAP the whole time. But then I started
interviewing people on my podcast and I started learning about airway and people who have sleep
apnea because they, you know, like develop, like their jaws don't develop properly and they have
like these narrow and high arch palettes and not enough room for their tongue and all of these things.
And I just kept being like, that's me. And I read James Nastier's book and I was like,
which is fabulous. And which breathes me. Yeah. Yeah. The whole time. So I guess like that started
my journey to try and reverse all the stuff. But and so I kind of like started working with a
myofunctional therapist. I worked with a potato breathing instructor. I have been doing pale
extension. And you got your tongue released too, right? I got tongue tie released. And yeah. So
it's been a lot. It is. And it's a huge journey. Yeah. And so I think that why I love what you're
doing is that we need to like get the message out to parents of children. Yeah. So that they can
intervene. And because I think my life would have turned out a lot differently if that had happened
as they got out. Right. And it's so interesting. Just listening to your story and you both you
and I both now know what the signs are. And literally, you're just a giant checkbox of the
son of a son as a child. And for people that are wondering, you know, why was I so psyched to have
you on our podcast so early on? Because you are a poster child for what happens if you don't catch it
early. And throughout your experience, you heard over and over, it's just this, it's just this,
it's just, you know, it's chronic fatigue or mom. So many people, and especially with kids,
this is what we're running into. No, no, no, they just have ADHD. No, no, no, no, no, this is, you
know, they're just at this age. This is how they are. I mean, there's a definite need to advocate
for yourself and for your child. Yes. Because I think that we're at this kind of point where
dentists and doctors are not receiving training. We hope that that's going to change, right? But
right, right. Right now, yeah, it's like anything to do with your airways falling through the cracks
because medical doctors are very much, you know, looking at sleep apnea in terms of CPAP and how
do we keep that airway open, not why it developed that way, right? And a lot of dentists are saying
that's a medical problem, right? That's not my, you know, jurisdiction. But I think that, so I
think for a lot of people, and they're going to be specialists who are saying, you know,
I don't know what you're talking about, and they're having to push and find the right people.
And the right people are right there, but it just takes work to find them. Right, exactly,
which is part of what we're advocating for. You know, one of the things I heard you say,
and I recently published this on our social media with a great photo of you, and the reason I put
the show up is because it's you and your brother, but your mouth is, I mean, it's right there. It's
wide open mouth breather. And you can even see the arch and I'm thinking we didn't know.
But every time you would go to the dentist, you said that that's when you realized you were a
mouth breather, because every time you go to the dentist, you basically drown. Yeah. So when I would
go to the dentist as a child, they would be, you know, like just doing a regular teeth cleaning.
And the water from that squirty thing would be, I would feel like I was drowning because I really
couldn't breathe out my nose at all. Right, right, right. And I just never did. And so they would be
like, breathe through your nose. This won't take a moment. And I'm just like, I can't breathe.
You know, like I would tell them I can't breathe through my nose. But those dentists and dental
hygienists, that goes on a red flag to them. But that should be a huge red flag. It should be a huge
red flag. And one of, I mean, full transplants, I mean, Jayden's Nestor is on our advisory board.
So I would say, yes, we do. But his book is just so amazing. But another one of our advisory board
members, Chris Duvall, is she was a hygienist. And it never occurred to me until listening to
her talk one time about how important the role of hygienists are in this process. Because, right,
because hygienists, though, you know, we talk about dentists and we talk about pediatricians.
Hygienists, they're the front lines. They're there with the kids first. Yes. And they've been trained,
clean, move them through, clean, move them through. But, you know, one of the things that Chris is
advocating for is none, no, no, especially in kids, take time, look at that airway, ask them
questions. So as a hygienist, cleaning your teeth, saying breathe through your nose and you're saying,
I can't, I can't, huge red flag. Right. Are you are you grinding your teeth? Because I was a huge,
like I grind my teeth, I seldom do. But like, you know, as a child, that was definitely, I mean,
you can tell that from wear and tear on kids teeth, right? Yes. Gallop tongues and just all of these
things. Right. Tongue ties, low forward tongue posture. So I think, I think you're right. I think
that the, and one of the things in this area is there's a lot of hygienists training as
myophonial therapists. But, but my thing is they don't even need to do that. If we could just train
every dental hygienist to know all of these signs, be able to say to the parent, you might want to,
you know, find and be able to refer them to the people who know about airway. Right. Right.
Right. You know, even, even just like the, the Breathe Institute has the fairest six check mark.
Talking about. I do know what you're talking about. And we'll put a link to it in this podcast for
people that don't. Yeah. Even if we had that available to every parent and every dental hygienist
in the country, even just a cursory glance at that. Like if, if I had been taken to the dentist
and somebody had had that on their break room wall, they would have said, I just saw a child with
every single one of those problems. Right. They would have seen huge tonsils, a huge tongue tie.
And, you know, like very, very narrow, high arched palate. And not properly developed jaws.
And, you know, bed wetting longer than normal teeth grinding. And I had tired all of those things.
And tired. Right. Like, yeah. And I know with a lot of children and ADHD type symptoms, you know,
some sort of hydroactivity is a, is a really, that didn't really happen with me, but like,
I think that's so common. So even a couple of those things, it's worth investigating.
Right. So many kids are misdiagnosed as ADHD. And all of this, you know, to me goes back to the core
of we're just treating the symptoms. Nobody's, you know, taking the time to dig in and figure out
why. And one of the things in your story that really kills me is, you know, as you're, you're
going along, you get to the point that they take out four teeth and let's put on retractive braces
for people who have questions about that. You can, there is a blog post on our website that goes
into that in more detail with graphics and a very, very detailed explanatory video. But in doing that,
that actually set you back and made it worse because of your tongue closer to your drinking
out and blocked it more. Yeah. I know. And here we are as parents thinking, we're doing the right
thing. We're helping our child. We're going to fix the teeth. We're going to make them straight.
Yeah. And there aren't. So that's kind of probably like just for people listening, like as a parent,
that's one of the things you're going to come up against all the time. Oh, yeah.
It's finding people who know what you're talking about or, or, or, you know, just who accept that
way of thinking about it. Because we're at this kind of moment where I hope, I mean, I just
interviewed James Naster for my podcast and he was saying, he doesn't think that this is
really that controversial anymore. But I'm on, you know, and I think that depending where you are
in the country, like I'm sure if you're in, you know, California, New York, and some of these
bigger places, and you're going to be able to connect with the right, you know, like trained
professionals in their way. But where I live in Northeast Florida, I just, I mean, my trying to
find some sort of solution for my daughter, who's 14, to, unfortunately, she had me as a mother. So
I've been, you know, she doesn't have any of these issues. And I made sure that she developed as a
nasal breather and all the different things. But like, you know, even just straightening some teeth,
there are no people offering expansion, right? Right. So it's just kind of, I had to, you know,
I eventually find an orthodontist I really like, who totally got what I was saying.
Yeah. And so, the way is the orthodontist. Oh, yeah, I have to drive through, right? Like,
yeah. Yeah. So that's, that's part of what people are dealing with. Like they, they want their
case to have straight teeth. But it's like, they, you know, do they want to drive an hour or two
hour, you know, like every six weeks, ever. To get it down a right, where it doesn't impact the
airway versus traditional orthodontics, which might be right around the corner. Yeah. And it's
worth saying that like traditional orthodontics, like just the number of people I've talked to,
like, you know, that can have a detrimental effect on your airway, or it could have a neutral
effect on your airway, or it could be good for, you know, it just depends how it's done and,
right. And who the, you know, professional you go to is. But for me, like, I feel certain that
that was a huge part of my development things like that, me and having a tiny airway.
I would agree just based on, honestly, not a doctor.
But obviously, but, you know, from everything that you and I have both researched, that's
when you get to your journey, and you get to that point where they pull teeth and
slap on retractive braces, you see that over and over and over and over. I mean, I just,
I just thought, I think that with my podcast, like, I've just talked to so many people now
who had the same story. Right. And to begin with, it was like, oh, like, that's the same as me.
But now that I've looked into it, Laura, I'm like, this is so common.
You were listening to Airway First with today's guest, Emma Cooksy. You can find out more about
the Children's Airway First Foundation and our mission to ensure that every child has access
to screening, evaluation, and treatment of all children's airway disorders before the age of six
on our website at childrensairwayfirst.org. You can also find tons of great resources
for parents on our website, including videos, blogs, recommended books, comprehensive medical
research, and more. As a reminder, this podcast and the opinions expressed here are not a medical
diagnosis. If you suspect your child might have an airway issue, contact your pediatric airway
dentist or pediatrician. And now, back to our conversation with Emma Cooksy.
The other aspect that I think is incredibly common and for a variety of reasons, I think it's kind
of pushed to the side is the anxiety and depression that goes with it. Yeah. You know, years and years
of wear and tear, which people don't acknowledge because, again, don't understand it. It's happened
on your body and on your brain, growing up by the time you hit your 20s.
Oh, yeah. I think that's very common and we're seeing that a lot, especially in young teens.
Yeah. So I would say the mental health aspect was definitely one of the best things about
starting my podcast because I think I like so many people when you go to the doctor repeatedly and you
say, I have a pen and chest when I wake up, I'm so anxious all the time. They say, oh, like,
you need to, you know, like go like a mental health route and do antidepressants and therapy
and all that, which I want to just say work. And there is there is help and there is, you know,
there are resources and there's treatments that work for anxiety and depression. Absolutely.
But at the same time, I think that there needs to be way more and looking at why people have
depression, anxiety. Agreed. Because I think that there's a very different, I've talked to
lots of people on the podcast who were told, you're having panic attacks in the middle of the night.
Right. But like that, which, you know, maybe that's that could be it for sure. But I just think if
you have sleep apnea, the chances are you're having an apnea and then waking up with this huge
ocean of adrenaline and it can very much feel like a panic attack. So yeah, I think that
destigmatizing the anxiety and depression that goes with this is really helpful. And just
just also recognizing like with sleep apnea, I think there's this thing of, well, there's a treatment
for that. So it's almost like, you know, oh, you have this thing, but like, oh, but you're doing
the CPAP thing. So you should be fine. So you're fine. Yeah. When so many of us continue to struggle
with anxiety and depression and continue just not to feel great. Right. So I think, but you know,
like there's there's definitely, and I felt better just the more I've found community with
other people who have very similar life experiences to me, it just really helps.
On social media, you had a real recently where you were cleaning your CPAP. Yeah. And I was,
I was dying because you're doing backstreet first of all, well done. But you cut to the point where
you talked about, you know, about is it sexy and are you sexual? And you were like, no, I appreciate
that you're taking this kind of approach to it. But I mean, this goes so deep that that's another
thing that does contribute to whether people want to admit it or not, your mental state.
Right. I mean, I think people have very different reactions to CPAP, right? Like, I think for me,
in some ways I was, I mean, it's not really lucky. But one of the things that came out of
my very late diagnosis, like it taking more than 10, 10 years, really 20 years, if you go back to
my life, right? So one of the things about that was that I was already married, right? I was already
like had a really great husband and he lived with me through it. So he was like, whatever's
going to help, like, you know, he's all about like whatever you need to do to get some sleep is what
needs to happen. And lots of people who are, you know, like 19 or, and, you know, single and
dating. And it is a consideration for sure. But I mean, I think like, yeah, a lot of us getting
the word out about like what some of the alternatives are and also this idea of like trying to get to
the root of why you have sleep at me in the first place and, and, you know, try and solve some of
those underlying issues. And so I know one of the other things I was going to say, like, Instagram,
I guess by its nature is kind of like a light, fairly light-hearted place to be.
But I think that, but you've done a good job keeping light-hearted and serious and a balance
because it is a serious topic. Oh, yeah. It really is. I just had total brain fog and I had
something to tell you and I can't pick what is. This is one of the things about being like hypoxic
for years. Yeah. Which this would be a great point to bring up that, that people also don't
realize lack of sleep over a prolonged period of time. This is again, this is one of, you know,
one of our big sounding moments with the Children's Airway Foundation.
It causes hypoxic brain damage. Yeah. Irreversible. Yeah. And, and in kids,
the studies have shown you can lose up to 10 IQ points. Yeah. Easily. That's yeah. It is. It's
huge. So I think sometimes, sometimes a lot of it is speaking to yourself kindly. Like, I love
Christy Nass work with self-compassion. And because I think that you're trying to hold yourself to
the standard of someone who has not been hypoxic for more than 10 years, probably 20. And, and
brain fog and, and lack of cognition, like that's a daily problem. True life. Yeah. Yeah. And so I
think like sometimes just knowing that like, you know, allows you to speak more kindly to yourself,
like you're doing the best you can. And I think that, you know, just a lot of the people I've
talked to, I'm in this like wonderful, I know what I was going to say. So Instagram is quite like
hearted, right? But what I was going to say was like one of the reasons I'm really driven to do
this work is that I am in this unbelievably privileged position where all these things have
happened to me. But I also have this wonderful life and like a loving and supportive husband.
And all the privilege to use my time in this way. So I think that that's part of it. Like, I just
feel as though, if not me, then who, who's going to do this, right? Right. And so I just really hope
like I the idea of like, I haven't held down a full time job since I was, you know, since I was 29
before I moved to the States, because I can't. Like, I can't like, I just can't, you know,
whether it's like the cognition and my brain, like, you know, like staying with something that long
or just sheer exhaustion and just still not getting good quality sleep.
Right. And this would be, you know, end to point out to listeners again, you have a degree in law
and economics. Yeah. Yeah. Yeah. There's no way like, so when I was in my, because sometimes,
you know, I would come across people who'd be like, you have a law degree. Well, partly they
would be like, you have a law degree because that's weird, because I don't really seem like a
lawyer type, I guess. Right. And but I think now looking back, like, there's no way I could have,
like I did four years of law and then I went and worked for the law firm in Sydney. And then when
I got back to Glasgow, I was like, what kind of tamping job can I do that will pay my share of the
rent and keep food on the table? And that was all I was looking for. Right. And everybody around me
is like, what, you know, what I want to achieve with my career, I wasn't in that headspace at all.
I was like, hi, can I survive? Survive. Right. Yeah. Right. Which goes back to what we're talking
about the mental impact that nobody talks about that goes along with these breathing disorders,
especially undiagnosed breathing disorders. Because how many years did you spend going to
doctors? No, you're fine. You're fine. You're fine. It's this, it's that. Yeah. And I really
started to think what's wrong. I would be at all these jobs. Like, I mean, honestly, I feel kind of bad
for some of my bosses back in the day, because I would, I kind of in my twenties had this cycle,
which I feel like a lot of people in, well, I hope people hear this. And if they recognize
themselves, they go and have their way, we looked at and right, they have to be back near or whatever.
Which is why we do this podcast. Right. And so early on, I had like a really kind boss who,
I would be crying like most days. And it was so hard. Yeah. Like I just, you know,
but you can imagine going all night and having, you know, maybe like 25 at me as an hour.
And I seem to be very reactive and I would wake up almost all the time, like multiple times an hour.
I was exhausted and just like felt so like, you know, I mean, I was not doing high quality work.
I was doing my best, but it felt just like insurmountable, you know. And so I think at the
time I made it about like, I have a mean boss or I don't like my coworkers or, you know, like,
this isn't the right job for me. Right. When really looking back, it was none of them.
I was just exhausted. I couldn't function. Sure. Yeah. Right. Right. So it's definitely, I mean,
like one of my bosses, you know, would be like really kind and he was just like, is there anything
going on at home? And I'd be like, all that's going on at home is I'm going home at the end of my
work day and sleeping all the time that I'm not here and then getting up and doing it again.
And my husband's lovely. So, you know, like that, that's kind of, that was my experience.
Right. So I know that, that this has led you to start your podcast, which again,
I will say is brilliant for those of you who haven't listened. There is a link that we will
be putting in here, but it's the sleep apnea stories. Actually not the, it's just sleep apnea
stories. The bad news or yes, her. But it's also led you to project sleep. And I'd love to kind of
open it up so you could talk a little bit about project sleep, you know, who they are. You are
newly on the board of directors. And really, you know, what are you guys doing? So I am,
thanks so much for asking about it. Cause I love talking about fresh.
I know. And I loved your sleep in and March. That was right. So I first learned about project
sleep just on Instagram. And I saw that Julie flag are who is their CEO and was doing a lot of work
where they were training people with sleep disorders, mainly narcolepsy. So Julie has
narcolepsy and she started this nonprofit, I think six years ago to spread awareness about
sleep disorders. So I started seeing excerpts of talks that some of these sort of trained
speakers, they have a program called rising voices of narcolepsy and they had some speakers who
were sharing their stories. And so sleep disorder stories is kind of my deal. Yeah. So I saw that
and I connected with Julie and just was like, I love what you're doing. And she actually came on
the podcast just to talk a bit about raising awareness. And then we just became really fast
friends. And we talked a lot about how we have shared goals to try and spread awareness. But I knew
that on my own, you know, I can do my podcasts and I can do my own thing. But the more I can join
up with other people who are spreading awareness, the better it would be. So we talked a lot about
how, you know, she's done so many great programs. She has like a scholarship for people with
narcolepsy going to college. And they do they just do a ton of great things. They're doing a lot of
advocacy work in DC where they're trying to and, you know, just keep pushing for more funding and
more researching to sleep disorders. So I just was all in. So I did I became the first person to
complete their Rising Voices speaker training program last summer, as the first person would
sleep at me to go through it. Okay. And so that was kind of a pilot to see how we got on with it.
So it went really well. And so you can see my I've got like my stories up there on the Project
Sleep website. And and I loved that experience just being with other people with sleep disorders.
And even though you would think, well, narcolepsy and sleep apnea are so different.
And and they are very different. Yes. I think that some of the just having that time with other
people coping with sleep disorders, like on like weekly zooms to to work on our and presentations
and get feedback from each other just really helped me feel less alone. Like, you know,
a lot of the things to do with going on diagnosed for a long time, a lot of the things to do with
families not necessarily understanding or being supportive. And we actually realized that we do
have a lot in common. So this is kind of the transition year where I think we're going to
move to fully rebranding that as rising voices and covering all the sleep disorders net by next
year, I think. But this summer we have, I think five or six people with sleep apnea here are going
to be doing the rising voices. Oh, wow. So that makes me cry. Yeah. And so yeah, joining the board,
I just was like, delighted. And because it just allows me to help include sleep apnea in some of
the work that they're doing. And I just think there's so much work to do in raising awareness.
And Julie's whole ethos is using people's stories really to do that to draw people in. I think that
there's there's always so much you can do with telling people information. Stories really draw
people in. Well, you've got that connection and you get, oh, wait, that's me. So that's what project
sleeps all about. So yeah, I really enjoy working with them. And next month, actually, I'll be at the
there's the sleep 2022 conference in Charlotte. Oh, they'll join the New York as well, right?
Now I'm going all over the place. And so in New York next month in May and then in June,
they've persuaded me to come to Charlotte. Okay. Because they have a little booth there. And
so I'll be there if any of you listening is going to be there. Come and say hi.
Put a link to that in there as well. And I know, you know, and may you're speak, are you speaking?
Are you just attending? Oh, no, no, no, no. I'm just a random lady with a podcast rocking. And yeah,
so these and some of the the conferences they do to do with airway or to do with sleep or whatever,
I like to go just because I think that we need more patient voices in the room. Yes. But it's
kind of funny because people will say, how many dentists do we have in the room and never real
say, yeah. And then how many sleep doctors? Okay, great. And then they'll kind of look at me and be
like, is there anyone? What are you here for? I'm a patient advocate with a podcast. And you do
sometimes just feel a little bit like the odd one out. But I think that the more and the more we can
be in the room and you know, and I'll keep on, I'll keep asking to speak at things, you know,
like people are starting to kind of be more receptive to that. So yeah, I think that it and
the experience of living with sleep apnea is one of the things that's missing a lot of times with
a lot of the solutions people come up with. Yeah. So and I love that you attend these things because
that's actually how we met because you were attending a conference. Yes. That candy our CEO
was at and you heard her speak and it was your story that drew her in.
And then yeah, I had candy on my podcast. Yes, by what you're doing and like,
yeah, I think the people with it really is just all about stories, right? Like you can just relate
so much as a mother to her story. And I think that it's powerful and I think that, you know,
the more people hear that, the more they're going to start joining the docs of their own children
and what's going on. I agree. I agree. So what as we close, I want to make sure that I get this
right by the way, you had a quote that I heard in one of your talks. Mouth breathing is completely
common and just because it's common doesn't make it normal, right? So as we end, I would like you
just, you know, to me and I've listened to so much, but that was one of the most profound things that
you said. Yes. And to me, that is the core of what's wrong. Yes. Yes. It's normalized.
Yeah. One of the problems though with it's almost like you can't put it back in the box.
So once you go down the rabbit hole and read all this stuff about what's wrong with people's
airways, you see it everywhere. Everywhere. I watched TV and mouth breathing, mouth breathing.
Oh, look, recess job. You see it. Yes. Everywhere. So you do have to remind yourself that it's not
okay to go out to people that you don't know. Oh my gosh. Push about. Yeah. Do you have an airway?
Do you sleep well? If you have children in your family or people, you know, cousins or,
you know, close friends, kids, then please, you know, just even say, hey, I read this book,
I would love for you to read and find a really good book on the subject and give it to them.
Because I think that it's normalized to the point where parents even will say to their pediatrician,
you know, if you said, oh, my child's a mouth breather, most pediatricians don't know what to
deal with that information. Or they think you grow out of it. They would say, oh, I'm sure you'll
grow out of it when the opposite was true. Right. Exactly. Yeah. And I think, I think honestly,
like my biggest thing for parents is finding myofunctional therapists. Like, I feel like
myofunctional therapists are so well connected with all the different people that you need to go
and see. Like that helped me. That's a great starting point. Yeah. I mean, I think just to have them
even do an evaluation, it's not that, you know, it's not that much of a commitment. Just take your kid
for an hour or whatever and see what they say. Because I think until I went to myofunctional
therapists, I'd seen all these things of myself and I thought, wow, I have a lot of those characteristics.
But until I heard her tell me like her report, which was basically like, I don't even know how
you're eating with that tongue placement. Like that's crazy. Yeah. You know, like you definitely
have all the good stuff going on. Like I think that until you really hear that, you're kind of like,
oh, maybe it's fine, but it's not. But it's not. It's really normal. It's really common, but it's
not normal. Right. Right. I cannot thank you enough for coming on our podcast today. Thank you for
having me. I appreciate it. I appreciate it. Emma Cooksey's podcast is Sleep Apnea Stories. We'll
have a link to it below. Please check it out. And thank you so much. Thank you so much.
Thanks again to today's guest, Emma Cooksey, for sharing her story and to each of you for
listening to today's episode. If you're new to our podcast, please don't forget to subscribe.
And if you enjoyed today's episode, please remember to leave us a review or a comment
about what you enjoyed most. You can stay connected with the Children's Airway First Foundation by
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episode, shoot us a note via the contacts page on our website, or send us an email directly at info
at childrensairwayfirst.org. As a reminder, this podcast and the opinions expressed here
are not a medical diagnosis. If you suspect your child might have an airway issue,
contact your pediatric airway dentist or pediatrician. And finally, thanks to all the parents and
medical professionals out there that are working hard to help make the lives of kids around the
globe a little better. Take care, stay safe, and happy breathing, everyone.