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Hi everybody and welcome to episode two of Airway First,

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podcast from the Children's Airway First Foundation. I'm your host, Rebecca Basma.

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I guess today is Emma Cookey, podcast host, writer, speaker, and one of the estimated 22 million

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diagnosed American adults suffering with obstructive sleep apnea. Through her weekly podcast,

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Sleep Apnea Stories, Emma not only shares her journey, but she's also become a champion for

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others suffering from obstructive sleep apnea by breaking down sleep apnea stereotypes and

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raising awareness of both symptoms and treatments. Earlier this week, I was lucky enough to have

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the chance to sit down and talk to Emma about her personal airway journey and her life now as a

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podcaster and patient advocate for sleep apnea. So I know everyone has a unique story. For those

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of you who don't know Emma and haven't ever heard her story on her podcast, you can check it out.

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There's an episode where she explains it. We've also promoted a very short video on our social

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media where she gets into it. Go ahead and if you would just share a little bit about your story

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about how you found out that you have an airway disorder. Okay. So as a child, I had huge tonsils.

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I called them grade four. They were pretty much touching at the back of my throat. But I grew up,

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I'm in my 40s now. So I grew up in an era in the UK where they had swung from everybody having their

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tonsils removed to no one having their tonsils removed. So in order to get your tonsils removed,

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you needed to have a certain number of infections. Like people say, start here, we say tonsillitis.

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I would always have three a year and they wanted me to have four. So clearly I was not

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really that well and constantly having problems with my tonsils. I also had terrible allergies.

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But at the time, I had a big allergy scratch test on my back and my allergy to horses was so

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pronounced that we found out because I was like going to ride on a donkey at the beach and ended

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up in the hospital not able to breathe and everything. And so at that point, it was more like,

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how do we manage that? We're going to stay away from horses. But there was no the kind of things

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that are available now. I don't think we're really available then. I don't think like it certainly

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was a conversation to take me to an allergist or any of that. So I had all these problems which now,

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in retrospect, I also was a mice breather because of what I had going on with the allergies and the

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tonsils. And I definitely went through my childhood, mice breathing all the time, could not breathe

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through my nose. Nobody ever mentioned that it was a good idea to breathe through your nose.

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I know that you know where this is going. So then as a teenager, I had four teeth extracted

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and I had retracive braces for almost three years. And then, yeah, and I just never really felt

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well again after that process was done. It left me with a very small, you know, I already had a small

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and my and a narrow high arch palate and all these things. But nobody mentioned that there was

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anything wrong with that. So I just always felt quite tired. But I think that during my teenage

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years, I, you know, could explain away with like I'm doing a lot of stuff in high school and I'm

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busy and staying out later. Maybe that's why I'm quite tired. Oh, yeah. Right. Then I started

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university. And I was at university for four years. And during that time, I was always exhausted.

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And I would go to like lectures at 9am in my pajamas and stuff like that. But of course,

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like I went to university in Scotland, where I mean, probably like any college, right? Like

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everybody's going out drinking all the time. And so a lot of it could be explained away by I feel

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terrible, but then I have been out really late and all these things. Right. So then after university,

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I spent a year traveling. And so I went to Thailand and Malaysia, then to Sydney in Australia. And I

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worked in Sydney for about six months. And that's when I really started thinking like there's something

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wrong with my health. Like I couldn't bounce back like all my friends, I was working a lot of my

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friends had jobs in bars. And I ended up and with a job working for a big law firm and a commercial

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litigation department where which was lucrative. So it was good for backpacking because, and you

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know, I was already planning what I was going to do after those six months. So but I started crying

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every morning in the shower, like every morning. Just for the question. Yeah, just feeling like

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when I woke up in the morning, I felt like I hadn't even gone to bed the night before. And I

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definitely had a whole bunch of anxiety. And I would wake up with a pain in chest all the time.

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And really had every classic symptom of sleep apnea. So pain in chest all the time, multiple

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waking up at night, using the bathroom lots of times at night, morning headaches, and depression,

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anxiety. I mean, just pretty much every symptom. Right. So I hadn't really

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just because I was traveling, I hadn't really taught to any doctors. Like I was starting to

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think there's something not right, but I hadn't really taught anybody about it. So then when I

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got back to Scotland, I was working in Glasgow and I went to see GP there. And at that point,

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I kind of said like, this is all that's going on with me. And, you know, mainly I feel terrible.

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And, and he did like all the blood work and all the stuff. And, and came back and just was like,

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good news, there's nothing wrong. Like we can't find anything wrong. And, you know, it's probably

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just stress to like, you know, early 20s, you're probably stressed. So that was kind of became,

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I mean, it's not funny because it's my life, but it's almost funny in retrospect, because over

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those, and all of my 20s, I went to the doctor at least once a year to say, I feel terrible. I'm

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so exhausted. I feel anxious all the time. And so I kind of, you know, was treated for anxiety,

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but nobody really got to the root of why I was feeling that way. So every time I would go,

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they would say, you're really stressed because of what you have going on in your life, or,

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and then, so I should just say, just so nobody gets confused at the age of 30, I'd gotten married

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to my husband, he was from the United States in Scotland. And then we moved to Florida when I was

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30. And I got pregnant right away with my first daughter. So then I would go to the doctor and

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they would say, Oh, you're tired and anxious because you're pregnant. And I would be like,

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I don't feel like I'm going to itch. I was so nervous. And then I, you know, they said,

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we'll see what it's like, you know, after the baby comes and all that. Well,

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of course that disrupts your sleep. But my daughter like started sticking to the night,

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like maybe six months old. And I still felt horrendous. I was so napping, like,

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you know, every time she napped, I did all the things, but I was still exhausted. So I went

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back and they said, you have a young child. That's why you're tired. So years and years,

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I've just never gotten to the bottom of what happened. So then I was 30 with my daughter was,

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it was actually like no joke, like a week or two weeks after I'd been to the doctor and they said,

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you're just tired because you have a newborn. And I took Katie to go see my mother-in-law.

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And she lives about 40 minutes away. And we were driving home across the Buckman Bridge

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here in Jacksonville. And I just had that feeling that people have, you know, like driving where

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you have an intense, I'm going to fall asleep. Like my eyes were just closing and it was really

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it was really scary. And I just was focusing on this truck. I was on like a four lane bridge

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filled with traffic and lots of trucks. And I just started thinking like, I'm going to hit that truck

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in front of me. And so a cat focused on the license plate. And then I had that momentary,

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like I fell asleep at the wheel. And then the next thing I knew, this like slow motion license

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plate of the truck in front of me was coming towards me, like kind of slowly, but also fast.

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It was like the rain just saying, and I slammed on my brakes. And we didn't hit that truck by some

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miracle. Like it was just, I still am like, you know, astonished because it really, I had to

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brake so hard. It made like a really terrible noise. And so then when I got off the bridge,

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I pulled over and I mapped for like 20 minutes just to kind of take the edge off. And then I

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drove home. And at that point, I just gave the baby to my husband. And I said, like, there is

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something wrong with my sleep. And I didn't even really know like what a sleep study was or anything

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about it. But I called back that doctor who had just said, I'll all be fine. And I said, there's

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something wrong with my sleep. I just, you know, I fell asleep at the wheel and I almost got in

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a really serious car wreck. So at that point, they said, okay, maybe you should go and have a sleep

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study. And so I had a sleep study. And I think at that point, I just kind of was like, you know,

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I felt I just knew nothing about it. So I felt like sleep disorders or something really foreign

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that hardly anybody has. Right. Older people. Right. Older people. And I don't even think

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I'd ever heard of sleep apnea, to be honest. So I had that test done. And I went to get the results

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and they said, you have obstructive sleep apnea. And we're going to give you a CPAP. And I was like,

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why do I have obstructive sleep apnea? And they said, Oh, you know, lots of people have it like,

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you know, they were kind of surprised because they weren't used to seeing young, like, you know,

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women who weren't overweight and that kind of thing. So they were like, yeah, strange thing,

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you have sleep apnea. But then they were like, well, people have it for different reasons. And

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sometimes it's hereditary. And I'm like, my parents don't have this. Like, I don't know. Yeah. So I

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kind of left with more questions than answers. But I also, you know, was the mom to a young baby.

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So I just was like, fine, if I need to do the CPAP thing, let me go home and get on with it.

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Because I have to like, you know, feed my baby and do things I have to do. And so then,

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yeah, so then I like a lot of people I struggle with CPAP. And it probably, you know, it took me

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about maybe like a year to really figure out so I could light these in the CPAP all night and

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all that. Then I pretty much just got on with my life and used CPAP for 14 years. And then

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I get confused about the set for a while, I was saying 12 years, but I've been saying that for

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three years. I think I think it was so to take me to, I think it was 13 years to take me to

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the summer of 2020. Okay. And then summer 2020, I started my podcast sleep apnea stories. And a

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lot of that was to do with just trying to connect with other people who have sleep apnea and maybe

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you're looking for answers as to why they have sleep apnea and trying to, you know, kind of resolve

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the underlying issues rather than, you know, just doing CPAP forever kind of thing. Although I was,

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I was, you know, I'm still doing CPAP. I've been doing CPAP the whole time. But then I started

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interviewing people on my podcast and I started learning about airway and people who have sleep

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apnea because they, you know, like develop, like their jaws don't develop properly and they have

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like these narrow and high arch palettes and not enough room for their tongue and all of these things.

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And I just kept being like, that's me. And I read James Nastier's book and I was like,

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which is fabulous. And which breathes me. Yeah. Yeah. The whole time. So I guess like that started

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my journey to try and reverse all the stuff. But and so I kind of like started working with a

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myofunctional therapist. I worked with a potato breathing instructor. I have been doing pale

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extension. And you got your tongue released too, right? I got tongue tie released. And yeah. So

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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

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doing is that we need to like get the message out to parents of children. Yeah. So that they can

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intervene. And because I think my life would have turned out a lot differently if that had happened

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as they got out. Right. And it's so interesting. Just listening to your story and you both you

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and I both now know what the signs are. And literally, you're just a giant checkbox of the

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son of a son as a child. And for people that are wondering, you know, why was I so psyched to have

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you on our podcast so early on? Because you are a poster child for what happens if you don't catch it

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early. And throughout your experience, you heard over and over, it's just this, it's just this,

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it's just, you know, it's chronic fatigue or mom. So many people, and especially with kids,

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this is what we're running into. No, no, no, they just have ADHD. No, no, no, no, no, this is, you

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know, they're just at this age. This is how they are. I mean, there's a definite need to advocate

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for yourself and for your child. Yes. Because I think that we're at this kind of point where

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dentists and doctors are not receiving training. We hope that that's going to change, right? But

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right, right. Right now, yeah, it's like anything to do with your airways falling through the cracks

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because medical doctors are very much, you know, looking at sleep apnea in terms of CPAP and how

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do we keep that airway open, not why it developed that way, right? And a lot of dentists are saying

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that's a medical problem, right? That's not my, you know, jurisdiction. But I think that, so I

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think for a lot of people, and they're going to be specialists who are saying, you know,

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I don't know what you're talking about, and they're having to push and find the right people.

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And the right people are right there, but it just takes work to find them. Right, exactly,

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which is part of what we're advocating for. You know, one of the things I heard you say,

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and I recently published this on our social media with a great photo of you, and the reason I put

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the show up is because it's you and your brother, but your mouth is, I mean, it's right there. It's

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wide open mouth breather. And you can even see the arch and I'm thinking we didn't know.

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But every time you would go to the dentist, you said that that's when you realized you were a

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mouth breather, because every time you go to the dentist, you basically drown. Yeah. So when I would

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go to the dentist as a child, they would be, you know, like just doing a regular teeth cleaning.

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And the water from that squirty thing would be, I would feel like I was drowning because I really

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couldn't breathe out my nose at all. Right, right, right. And I just never did. And so they would be

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like, breathe through your nose. This won't take a moment. And I'm just like, I can't breathe.

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You know, like I would tell them I can't breathe through my nose. But those dentists and dental

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hygienists, that goes on a red flag to them. But that should be a huge red flag. It should be a huge

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red flag. And one of, I mean, full transplants, I mean, Jayden's Nestor is on our advisory board.

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So I would say, yes, we do. But his book is just so amazing. But another one of our advisory board

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members, Chris Duvall, is she was a hygienist. And it never occurred to me until listening to

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her talk one time about how important the role of hygienists are in this process. Because, right,

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because hygienists, though, you know, we talk about dentists and we talk about pediatricians.

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Hygienists, they're the front lines. They're there with the kids first. Yes. And they've been trained,

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clean, move them through, clean, move them through. But, you know, one of the things that Chris is

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advocating for is none, no, no, especially in kids, take time, look at that airway, ask them

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questions. So as a hygienist, cleaning your teeth, saying breathe through your nose and you're saying,

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I can't, I can't, huge red flag. Right. Are you are you grinding your teeth? Because I was a huge,

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like I grind my teeth, I seldom do. But like, you know, as a child, that was definitely, I mean,

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you can tell that from wear and tear on kids teeth, right? Yes. Gallop tongues and just all of these

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things. Right. Tongue ties, low forward tongue posture. So I think, I think you're right. I think

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that the, and one of the things in this area is there's a lot of hygienists training as

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myophonial therapists. But, but my thing is they don't even need to do that. If we could just train

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every dental hygienist to know all of these signs, be able to say to the parent, you might want to,

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you know, find and be able to refer them to the people who know about airway. Right. Right.

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Right. You know, even, even just like the, the Breathe Institute has the fairest six check mark.

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Talking about. I do know what you're talking about. And we'll put a link to it in this podcast for

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people that don't. Yeah. Even if we had that available to every parent and every dental hygienist

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in the country, even just a cursory glance at that. Like if, if I had been taken to the dentist

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and somebody had had that on their break room wall, they would have said, I just saw a child with

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every single one of those problems. Right. They would have seen huge tonsils, a huge tongue tie.

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And, you know, like very, very narrow, high arched palate. And not properly developed jaws.

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And, you know, bed wetting longer than normal teeth grinding. And I had tired all of those things.

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And tired. Right. Like, yeah. And I know with a lot of children and ADHD type symptoms, you know,

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some sort of hydroactivity is a, is a really, that didn't really happen with me, but like,

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I think that's so common. So even a couple of those things, it's worth investigating.

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Right. So many kids are misdiagnosed as ADHD. And all of this, you know, to me goes back to the core

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of we're just treating the symptoms. Nobody's, you know, taking the time to dig in and figure out

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why. And one of the things in your story that really kills me is, you know, as you're, you're

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going along, you get to the point that they take out four teeth and let's put on retractive braces

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for people who have questions about that. You can, there is a blog post on our website that goes

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into that in more detail with graphics and a very, very detailed explanatory video. But in doing that,

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that actually set you back and made it worse because of your tongue closer to your drinking

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out and blocked it more. Yeah. I know. And here we are as parents thinking, we're doing the right

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thing. We're helping our child. We're going to fix the teeth. We're going to make them straight.

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Yeah. And there aren't. So that's kind of probably like just for people listening, like as a parent,

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that's one of the things you're going to come up against all the time. Oh, yeah.

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It's finding people who know what you're talking about or, or, or, you know, just who accept that

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way of thinking about it. Because we're at this kind of moment where I hope, I mean, I just

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interviewed James Naster for my podcast and he was saying, he doesn't think that this is

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really that controversial anymore. But I'm on, you know, and I think that depending where you are

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in the country, like I'm sure if you're in, you know, California, New York, and some of these

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bigger places, and you're going to be able to connect with the right, you know, like trained

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professionals in their way. But where I live in Northeast Florida, I just, I mean, my trying to

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find some sort of solution for my daughter, who's 14, to, unfortunately, she had me as a mother. So

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I've been, you know, she doesn't have any of these issues. And I made sure that she developed as a

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nasal breather and all the different things. But like, you know, even just straightening some teeth,

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there are no people offering expansion, right? Right. So it's just kind of, I had to, you know,

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I eventually find an orthodontist I really like, who totally got what I was saying.

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Yeah. And so, the way is the orthodontist. Oh, yeah, I have to drive through, right? Like,

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yeah. Yeah. So that's, that's part of what people are dealing with. Like they, they want their

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case to have straight teeth. But it's like, they, you know, do they want to drive an hour or two

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hour, you know, like every six weeks, ever. To get it down a right, where it doesn't impact the

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airway versus traditional orthodontics, which might be right around the corner. Yeah. And it's

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worth saying that like traditional orthodontics, like just the number of people I've talked to,

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like, you know, that can have a detrimental effect on your airway, or it could have a neutral

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effect on your airway, or it could be good for, you know, it just depends how it's done and,

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right. And who the, you know, professional you go to is. But for me, like, I feel certain that

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that was a huge part of my development things like that, me and having a tiny airway.

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I would agree just based on, honestly, not a doctor.

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But obviously, but, you know, from everything that you and I have both researched, that's

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when you get to your journey, and you get to that point where they pull teeth and

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slap on retractive braces, you see that over and over and over and over. I mean, I just,

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I just thought, I think that with my podcast, like, I've just talked to so many people now

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who had the same story. Right. And to begin with, it was like, oh, like, that's the same as me.

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But now that I've looked into it, Laura, I'm like, this is so common.

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You were listening to Airway First with today's guest, Emma Cooksy. You can find out more about

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the Children's Airway First Foundation and our mission to ensure that every child has access

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to screening, evaluation, and treatment of all children's airway disorders before the age of six

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on our website at childrensairwayfirst.org. You can also find tons of great resources

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for parents on our website, including videos, blogs, recommended books, comprehensive medical

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research, and more. As a reminder, this podcast and the opinions expressed here are not a medical

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diagnosis. If you suspect your child might have an airway issue, contact your pediatric airway

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dentist or pediatrician. And now, back to our conversation with Emma Cooksy.

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The other aspect that I think is incredibly common and for a variety of reasons, I think it's kind

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of pushed to the side is the anxiety and depression that goes with it. Yeah. You know, years and years

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of wear and tear, which people don't acknowledge because, again, don't understand it. It's happened

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on your body and on your brain, growing up by the time you hit your 20s.

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Oh, yeah. I think that's very common and we're seeing that a lot, especially in young teens.

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Yeah. So I would say the mental health aspect was definitely one of the best things about

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starting my podcast because I think I like so many people when you go to the doctor repeatedly and you

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say, I have a pen and chest when I wake up, I'm so anxious all the time. They say, oh, like,

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you need to, you know, like go like a mental health route and do antidepressants and therapy

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and all that, which I want to just say work. And there is there is help and there is, you know,

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there are resources and there's treatments that work for anxiety and depression. Absolutely.

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But at the same time, I think that there needs to be way more and looking at why people have

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depression, anxiety. Agreed. Because I think that there's a very different, I've talked to

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lots of people on the podcast who were told, you're having panic attacks in the middle of the night.

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Right. But like that, which, you know, maybe that's that could be it for sure. But I just think if

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you have sleep apnea, the chances are you're having an apnea and then waking up with this huge

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ocean of adrenaline and it can very much feel like a panic attack. So yeah, I think that

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destigmatizing the anxiety and depression that goes with this is really helpful. And just

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just also recognizing like with sleep apnea, I think there's this thing of, well, there's a treatment

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for that. So it's almost like, you know, oh, you have this thing, but like, oh, but you're doing

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the CPAP thing. So you should be fine. So you're fine. Yeah. When so many of us continue to struggle

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with anxiety and depression and continue just not to feel great. Right. So I think, but you know,

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like there's there's definitely, and I felt better just the more I've found community with

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other people who have very similar life experiences to me, it just really helps.

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On social media, you had a real recently where you were cleaning your CPAP. Yeah. And I was,

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I was dying because you're doing backstreet first of all, well done. But you cut to the point where

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you talked about, you know, about is it sexy and are you sexual? And you were like, no, I appreciate

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that you're taking this kind of approach to it. But I mean, this goes so deep that that's another

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thing that does contribute to whether people want to admit it or not, your mental state.

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Right. I mean, I think people have very different reactions to CPAP, right? Like, I think for me,

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in some ways I was, I mean, it's not really lucky. But one of the things that came out of

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my very late diagnosis, like it taking more than 10, 10 years, really 20 years, if you go back to

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my life, right? So one of the things about that was that I was already married, right? I was already

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like had a really great husband and he lived with me through it. So he was like, whatever's

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going to help, like, you know, he's all about like whatever you need to do to get some sleep is what

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needs to happen. And lots of people who are, you know, like 19 or, and, you know, single and

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dating. And it is a consideration for sure. But I mean, I think like, yeah, a lot of us getting

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the word out about like what some of the alternatives are and also this idea of like trying to get to

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the root of why you have sleep at me in the first place and, and, you know, try and solve some of

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those underlying issues. And so I know one of the other things I was going to say, like, Instagram,

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I guess by its nature is kind of like a light, fairly light-hearted place to be.

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But I think that, but you've done a good job keeping light-hearted and serious and a balance

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because it is a serious topic. Oh, yeah. It really is. I just had total brain fog and I had

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something to tell you and I can't pick what is. This is one of the things about being like hypoxic

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for years. Yeah. Which this would be a great point to bring up that, that people also don't

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realize lack of sleep over a prolonged period of time. This is again, this is one of, you know,

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one of our big sounding moments with the Children's Airway Foundation.

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It causes hypoxic brain damage. Yeah. Irreversible. Yeah. And, and in kids,

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the studies have shown you can lose up to 10 IQ points. Yeah. Easily. That's yeah. It is. It's

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huge. So I think sometimes, sometimes a lot of it is speaking to yourself kindly. Like, I love

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Christy Nass work with self-compassion. And because I think that you're trying to hold yourself to

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the standard of someone who has not been hypoxic for more than 10 years, probably 20. And, and

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brain fog and, and lack of cognition, like that's a daily problem. True life. Yeah. Yeah. And so I

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think like sometimes just knowing that like, you know, allows you to speak more kindly to yourself,

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like you're doing the best you can. And I think that, you know, just a lot of the people I've

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talked to, I'm in this like wonderful, I know what I was going to say. So Instagram is quite like

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hearted, right? But what I was going to say was like one of the reasons I'm really driven to do

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this work is that I am in this unbelievably privileged position where all these things have

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happened to me. But I also have this wonderful life and like a loving and supportive husband.

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And all the privilege to use my time in this way. So I think that that's part of it. Like, I just

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feel as though, if not me, then who, who's going to do this, right? Right. And so I just really hope

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like I the idea of like, I haven't held down a full time job since I was, you know, since I was 29

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before I moved to the States, because I can't. Like, I can't like, I just can't, you know,

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whether it's like the cognition and my brain, like, you know, like staying with something that long

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or just sheer exhaustion and just still not getting good quality sleep.

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Right. And this would be, you know, end to point out to listeners again, you have a degree in law

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and economics. Yeah. Yeah. Yeah. There's no way like, so when I was in my, because sometimes,

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you know, I would come across people who'd be like, you have a law degree. Well, partly they

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would be like, you have a law degree because that's weird, because I don't really seem like a

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lawyer type, I guess. Right. And but I think now looking back, like, there's no way I could have,

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like I did four years of law and then I went and worked for the law firm in Sydney. And then when

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I got back to Glasgow, I was like, what kind of tamping job can I do that will pay my share of the

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rent and keep food on the table? And that was all I was looking for. Right. And everybody around me

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is like, what, you know, what I want to achieve with my career, I wasn't in that headspace at all.

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I was like, hi, can I survive? Survive. Right. Yeah. Right. Which goes back to what we're talking

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about the mental impact that nobody talks about that goes along with these breathing disorders,

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especially undiagnosed breathing disorders. Because how many years did you spend going to

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doctors? No, you're fine. You're fine. You're fine. It's this, it's that. Yeah. And I really

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started to think what's wrong. I would be at all these jobs. Like, I mean, honestly, I feel kind of bad

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for some of my bosses back in the day, because I would, I kind of in my twenties had this cycle,

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which I feel like a lot of people in, well, I hope people hear this. And if they recognize

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themselves, they go and have their way, we looked at and right, they have to be back near or whatever.

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Which is why we do this podcast. Right. And so early on, I had like a really kind boss who,

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I would be crying like most days. And it was so hard. Yeah. Like I just, you know,

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but you can imagine going all night and having, you know, maybe like 25 at me as an hour.

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And I seem to be very reactive and I would wake up almost all the time, like multiple times an hour.

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I was exhausted and just like felt so like, you know, I mean, I was not doing high quality work.

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I was doing my best, but it felt just like insurmountable, you know. And so I think at the

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time I made it about like, I have a mean boss or I don't like my coworkers or, you know, like,

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this isn't the right job for me. Right. When really looking back, it was none of them.

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I was just exhausted. I couldn't function. Sure. Yeah. Right. Right. So it's definitely, I mean,

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like one of my bosses, you know, would be like really kind and he was just like, is there anything

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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

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work day and sleeping all the time that I'm not here and then getting up and doing it again.

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And my husband's lovely. So, you know, like that, that's kind of, that was my experience.

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Right. So I know that, that this has led you to start your podcast, which again,

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I will say is brilliant for those of you who haven't listened. There is a link that we will

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be putting in here, but it's the sleep apnea stories. Actually not the, it's just sleep apnea

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stories. The bad news or yes, her. But it's also led you to project sleep. And I'd love to kind of

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open it up so you could talk a little bit about project sleep, you know, who they are. You are

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newly on the board of directors. And really, you know, what are you guys doing? So I am,

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thanks so much for asking about it. Cause I love talking about fresh.

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I know. And I loved your sleep in and March. That was right. So I first learned about project

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sleep just on Instagram. And I saw that Julie flag are who is their CEO and was doing a lot of work

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where they were training people with sleep disorders, mainly narcolepsy. So Julie has

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narcolepsy and she started this nonprofit, I think six years ago to spread awareness about

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sleep disorders. So I started seeing excerpts of talks that some of these sort of trained

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speakers, they have a program called rising voices of narcolepsy and they had some speakers who

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were sharing their stories. And so sleep disorder stories is kind of my deal. Yeah. So I saw that

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and I connected with Julie and just was like, I love what you're doing. And she actually came on

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the podcast just to talk a bit about raising awareness. And then we just became really fast

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friends. And we talked a lot about how we have shared goals to try and spread awareness. But I knew

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that on my own, you know, I can do my podcasts and I can do my own thing. But the more I can join

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up with other people who are spreading awareness, the better it would be. So we talked a lot about

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how, you know, she's done so many great programs. She has like a scholarship for people with

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narcolepsy going to college. And they do they just do a ton of great things. They're doing a lot of

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advocacy work in DC where they're trying to and, you know, just keep pushing for more funding and

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more researching to sleep disorders. So I just was all in. So I did I became the first person to

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complete their Rising Voices speaker training program last summer, as the first person would

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sleep at me to go through it. Okay. And so that was kind of a pilot to see how we got on with it.

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So it went really well. And so you can see my I've got like my stories up there on the Project

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Sleep website. And and I loved that experience just being with other people with sleep disorders.

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And even though you would think, well, narcolepsy and sleep apnea are so different.

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And and they are very different. Yes. I think that some of the just having that time with other

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people coping with sleep disorders, like on like weekly zooms to to work on our and presentations

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and get feedback from each other just really helped me feel less alone. Like, you know,

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a lot of the things to do with going on diagnosed for a long time, a lot of the things to do with

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families not necessarily understanding or being supportive. And we actually realized that we do

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have a lot in common. So this is kind of the transition year where I think we're going to

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move to fully rebranding that as rising voices and covering all the sleep disorders net by next

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year, I think. But this summer we have, I think five or six people with sleep apnea here are going

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to be doing the rising voices. Oh, wow. So that makes me cry. Yeah. And so yeah, joining the board,

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I just was like, delighted. And because it just allows me to help include sleep apnea in some of

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the work that they're doing. And I just think there's so much work to do in raising awareness.

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And Julie's whole ethos is using people's stories really to do that to draw people in. I think that

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there's there's always so much you can do with telling people information. Stories really draw

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people in. Well, you've got that connection and you get, oh, wait, that's me. So that's what project

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sleeps all about. So yeah, I really enjoy working with them. And next month, actually, I'll be at the

372
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there's the sleep 2022 conference in Charlotte. Oh, they'll join the New York as well, right?

373
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Now I'm going all over the place. And so in New York next month in May and then in June,

374
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they've persuaded me to come to Charlotte. Okay. Because they have a little booth there. And

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so I'll be there if any of you listening is going to be there. Come and say hi.

376
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Put a link to that in there as well. And I know, you know, and may you're speak, are you speaking?

377
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Are you just attending? Oh, no, no, no, no. I'm just a random lady with a podcast rocking. And yeah,

378
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so these and some of the the conferences they do to do with airway or to do with sleep or whatever,

379
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I like to go just because I think that we need more patient voices in the room. Yes. But it's

380
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kind of funny because people will say, how many dentists do we have in the room and never real

381
00:43:00,000 --> 00:43:06,720
say, yeah. And then how many sleep doctors? Okay, great. And then they'll kind of look at me and be

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like, is there anyone? What are you here for? I'm a patient advocate with a podcast. And you do

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sometimes just feel a little bit like the odd one out. But I think that the more and the more we can

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be in the room and you know, and I'll keep on, I'll keep asking to speak at things, you know,

385
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like people are starting to kind of be more receptive to that. So yeah, I think that it and

386
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the experience of living with sleep apnea is one of the things that's missing a lot of times with

387
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a lot of the solutions people come up with. Yeah. So and I love that you attend these things because

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that's actually how we met because you were attending a conference. Yes. That candy our CEO

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was at and you heard her speak and it was your story that drew her in.

390
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And then yeah, I had candy on my podcast. Yes, by what you're doing and like,

391
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yeah, I think the people with it really is just all about stories, right? Like you can just relate

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so much as a mother to her story. And I think that it's powerful and I think that, you know,

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the more people hear that, the more they're going to start joining the docs of their own children

394
00:44:30,640 --> 00:44:36,480
and what's going on. I agree. I agree. So what as we close, I want to make sure that I get this

395
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right by the way, you had a quote that I heard in one of your talks. Mouth breathing is completely

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common and just because it's common doesn't make it normal, right? So as we end, I would like you

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just, you know, to me and I've listened to so much, but that was one of the most profound things that

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you said. Yes. And to me, that is the core of what's wrong. Yes. Yes. It's normalized.

399
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Yeah. One of the problems though with it's almost like you can't put it back in the box.

400
00:45:17,600 --> 00:45:22,800
So once you go down the rabbit hole and read all this stuff about what's wrong with people's

401
00:45:22,800 --> 00:45:29,600
airways, you see it everywhere. Everywhere. I watched TV and mouth breathing, mouth breathing.

402
00:45:29,600 --> 00:45:35,760
Oh, look, recess job. You see it. Yes. Everywhere. So you do have to remind yourself that it's not

403
00:45:35,760 --> 00:45:41,040
okay to go out to people that you don't know. Oh my gosh. Push about. Yeah. Do you have an airway?

404
00:45:41,040 --> 00:45:47,120
Do you sleep well? If you have children in your family or people, you know, cousins or,

405
00:45:48,880 --> 00:45:55,920
you know, close friends, kids, then please, you know, just even say, hey, I read this book,

406
00:45:55,920 --> 00:46:02,880
I would love for you to read and find a really good book on the subject and give it to them.

407
00:46:02,880 --> 00:46:12,240
Because I think that it's normalized to the point where parents even will say to their pediatrician,

408
00:46:13,200 --> 00:46:17,600
you know, if you said, oh, my child's a mouth breather, most pediatricians don't know what to

409
00:46:17,600 --> 00:46:22,160
deal with that information. Or they think you grow out of it. They would say, oh, I'm sure you'll

410
00:46:22,160 --> 00:46:27,920
grow out of it when the opposite was true. Right. Exactly. Yeah. And I think, I think honestly,

411
00:46:27,920 --> 00:46:35,280
like my biggest thing for parents is finding myofunctional therapists. Like, I feel like

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00:46:35,280 --> 00:46:43,040
myofunctional therapists are so well connected with all the different people that you need to go

413
00:46:43,040 --> 00:46:49,280
and see. Like that helped me. That's a great starting point. Yeah. I mean, I think just to have them

414
00:46:49,280 --> 00:46:55,680
even do an evaluation, it's not that, you know, it's not that much of a commitment. Just take your kid

415
00:46:55,680 --> 00:47:02,800
for an hour or whatever and see what they say. Because I think until I went to myofunctional

416
00:47:02,800 --> 00:47:09,920
therapists, I'd seen all these things of myself and I thought, wow, I have a lot of those characteristics.

417
00:47:09,920 --> 00:47:17,680
But until I heard her tell me like her report, which was basically like, I don't even know how

418
00:47:17,680 --> 00:47:25,280
you're eating with that tongue placement. Like that's crazy. Yeah. You know, like you definitely

419
00:47:25,280 --> 00:47:30,640
have all the good stuff going on. Like I think that until you really hear that, you're kind of like,

420
00:47:30,640 --> 00:47:36,480
oh, maybe it's fine, but it's not. But it's not. It's really normal. It's really common, but it's

421
00:47:36,480 --> 00:47:44,880
not normal. Right. Right. I cannot thank you enough for coming on our podcast today. Thank you for

422
00:47:44,880 --> 00:47:50,000
having me. I appreciate it. I appreciate it. Emma Cooksey's podcast is Sleep Apnea Stories. We'll

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have a link to it below. Please check it out. And thank you so much. Thank you so much.

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Thanks again to today's guest, Emma Cooksey, for sharing her story and to each of you for

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00:48:02,640 --> 00:48:07,920
listening to today's episode. If you're new to our podcast, please don't forget to subscribe.

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00:48:07,920 --> 00:48:12,320
And if you enjoyed today's episode, please remember to leave us a review or a comment

427
00:48:12,320 --> 00:48:18,000
about what you enjoyed most. You can stay connected with the Children's Airway First Foundation by

428
00:48:18,000 --> 00:48:24,480
following us on Instagram, Facebook, Twitter, and LinkedIn. If you'd like to be a guest on an upcoming

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00:48:24,480 --> 00:48:31,520
episode, shoot us a note via the contacts page on our website, or send us an email directly at info

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00:48:31,520 --> 00:48:38,240
at childrensairwayfirst.org. As a reminder, this podcast and the opinions expressed here

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00:48:38,240 --> 00:48:43,440
are not a medical diagnosis. If you suspect your child might have an airway issue,

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contact your pediatric airway dentist or pediatrician. And finally, thanks to all the parents and

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medical professionals out there that are working hard to help make the lives of kids around the

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globe a little better. Take care, stay safe, and happy breathing, everyone.