Hi everybody and welcome back to Airway First, the podcast from the Children's Airway First
Foundation. I'm your host Rebecca Downing. My guest today is Katherine Anderson, researcher
and Airways Stenosis advocate specializing in using the power of communities to drive insights.
For the past 18 years, Katherine has also lived with an incredibly rare airway disease known as
idiopathic subclotic stenosis. In 2009, Katherine set up the Facebook group Living with Idiopathic
Subclotic Stenosis. The group has now become the world's largest support group for this condition.
She speaks at conferences around the world, has written numerous articles and papers for
international peer-reviewed laryngology journals, and has involved in helping doctors with medical
studies and at helping patients with this disease. You can discover more about Katherine and her story
at winthecatsaway.net and more about the condition of airway stenosis via the Facebook group Living
with Idiopathic Subclotic Stenosis. And now here's my interview with Katherine Anderson.
Thanks so much for joining us today Katherine. I really appreciate it.
Yeah, thank you for inviting me. Absolutely. So today's discussion is a little different and I
want to make sure we level set that especially with parents that listen to our show. The,
I'm never really sure if I'm supposed to call this a disease or not, the condition that we're
going to talk about specifically today. It is airway related. However, since it relates mostly
to adults, however, there is kind of a correlation that we wanted to make sure that parents of younger
children heard and especially, you know, those that are teenage and up. So the organization that you're
with is Living with Idiopathic Subclotic Stenosis and it is a group on Facebook that anyone can
find, correct? Yes, that's correct. Awesome. And I also want to make sure the listeners know just to
be transparent. This one, this conversation may be a little emotional for me today because I am a
member of this group. I have suffered from this disease since 2004 myself. So it's a
little personal today. Yes. So let's go ahead and tell everybody a little bit about what is
Idiopathic Subclotic Stenosis. Okay, so it sounds like a really fancy name. Really complicated,
but when you break it down, it's not as fancy as it sounds. Idiopathic means we don't know what
cause is this. Subclotic is just the area just beneath your vocal cords. So if you touch your
neck and you feel it vibrate, just believe there will be your subclotic. So this is the location
of the next word, stenosis, which means narrowing. And you may well hear stenosis in relation to
hearts and spines and all sorts of places in your body where you can have stenosis.
But this is a narrowing just below your vocal cords with no known cause.
So, but there are several causes that it could be. So they often start with Idiopathic because
investigations need to be done in order to find out a bit more information. So.
Right. And I think that's what makes everyone in our group with this condition. So
I don't know, unique, I guess, because you hear the stories over and over. We were all
very healthy for the most part. We were athletes, we were active in our community,
acted with our families, and then boom, we have an airway disorder. Exactly. It does seem to come.
So for adults, it sort of appears generally 31, between 30 and 50, that's generally most
patients and myself, I was 29. So it's at the lower end of that when I first had my symptoms.
But yeah, that's kind of the age group for adults. And yeah, it's very hard. I mean,
one way your airway can be damaged is if you've been intubated. And there's a bit of debates
amongst doctors about how long it is before scout issue will turn up in your airway if you've been
intubated. But generally, it's accepted that it's within two years of that operation. And
it often will start growing quite slowly but build up over time. At the moment, there's almost a
pandemic of this condition from airway intubation from COVID patients. Doctors around the world who
are treating our disease are treating many, many more patients and they're people who've been
in intensive care with COVID and been intubated during that period. And now the airway is damaged.
And they're coming back later with this trouble with breathing. So yeah.
And those that are not idiopathic that we can tie it to some kind of intubation.
There's, does there's, pardon, I'm going from my perception here in the group. There's not
seem to come back quite as frequently as ours does though, does it? No. So from intubation, often
when, so the treatment for it is generally a surgery called a dilation and the doctor,
that it will be done under general anesthetic, it's often quite a quick operation, you know,
less than an hour. So the doctor anyway, patient obviously a lot more hangover. Right.
But the doctor, yeah, the doctor might think it's half an hour actually. But
if they do, especially if you're going to a centre that does a lot of these, it might be 20
minutes in a doctor. They can cut them out and it's really easy for them. And they move on.
Yeah, it's all done through the through the mouth. So endoscopically. So there's no cutting.
Once they're down in the airway, they will maybe use a laser to cut the scar and open it up and
then a balloon or sometimes just the balloon. So that's done. And the same surgery is done if
the airway is damaged through intubation for those patients. But often it doesn't come back
quite so frequently. So it might come back once a year for those patients. Then there's other
patients which haven't been intubated ever. There's quite a few of those. And their airways often
are closing up more frequently. So they will have a surgery feel fantastic. And within a few months,
it's their back to square one again, and needing another surgery. And those are the mystery patients.
There's there is these days now that all of those are somehow once you're having surgery,
I guess, more than twice a year, then your airway is it's a some form of vasculitis,
which is attacking your airway. But it's still a little bit, you're calling it the
apopic because there's no tests to prove that. And there's no, you know, they can't just say,
take a blood test and say, oh, yes, that's what you've got. Because nothing shows up in any of us.
They can't find it yet anyway. So there's lots of investigations that that's that's a theory. It is
related to vasculitis, which can be a nasty disease. Yeah. Yeah. And, you know, that's one of the
things that I kind of wanted to lead into as far as what we're doing with children's airway is
for the majority of us, I think we have had to be our own advocates with this disease. I remember
back in 2003, I believe is when it started for me, you know, the process of going to doctors and
talking to them and saying, listen, I've been an athlete my whole life. I'm very active person.
I have a young infant that, you know, I chase after and do things with her. I guess she was a
toddler by then. Never had allergies. Something's going on. And I kept saying, no, no, it's allergies.
No, you don't understand. I don't have these kind of allergies. This could not be impacting me. I
can't go up a flight of stairs without gasping for air. And I had to be my own advocate and push
and push and push. And that's one of the things that we tell parents all the time, you know your
child, you know, something's wrong. And some of the symptoms that we have, you do see in children,
but you know, as you and I have, have chatted offline, children don't know how to identify them.
You know, they don't understand that snoring, they first of all, they don't know they snore,
but they don't understand that snoring is not normal. That it's not normal for a young child
to weaves and gas as they go up the stairs or to have as we call it the Darth Vader breathing
that we do, you know, that these things aren't normal. So I think advocacy is
something that's very important. Don't you think? And don't take no for an answer. I mean, when you
feel like your doctor is fobbing you off with something that's doesn't feel quite right. And
and probably most of your life, you've been super healthy, maybe your child's been healthy.
And you always trust your doctor. The doctor knows best, even they're an expert, they trained at this.
But in the reality, once you get that gut feel that this isn't right, you have to keep pushing
and push for a second opinion. It's certainly within your right to get second, third, fourth
opinions. And, you know, do your research and read. I mean, everyone always tell you doctors
always tell you don't keep off Google, don't read Google. Right. You know, sometimes it is the right
thing to do to actually question what they're saying to you. And if you don't feel like it's
right, I think you have to keep this doing another answer. I would agree. And I think groups like
you know, the one that you've created on Facebook, these types of groups really help parents as far
as you know, you've already done the due diligence, you know, the documentation is there, the research
is there. There's a community that's built up. And I think that helps quite a bit, especially
when you're dealing with the unknown, such as any kind of airway issue, because they're just so hard
to pin down. Absolutely. And it's, it's, you just cannot explain how valuable it is to be able to
talk to another person who's going through the same things you. So whether you're the patient
that we have been or whether you're a parent with a child trying to understand is this normal
for my child, should I expect this and who should I see. I mean, you can get an endless amount of
just emotional support. And I know that lives have been saved just by having this group, you know,
just through somebody will be holding off going to the hospital, because they don't want to bother
them. And maybe I'm not as bad as I think. And other patients in the group will say, yes, just
get there, get yourself there ASAP and, you know, giving them advice on what steps to take to try
and protect themselves. Because also when you have an airway issue, the last thing you want is a
over enthusiastic junior emergency doctor damaging your airway or putting a tracheostomy
in and that's, again, I've been told by some of the world's top surgeons is one of the biggest
problems they say weekends are horrendous for people just responding with the wrong treatment.
And then they have to try and spend years sometimes undoing the damage from one night.
And that's caused by doctors who are, you know, trying to do the right thing, but are not.
Right, because they don't understand it, right. And I do think that's also one of the
issues that we're finding that parents are running into when they're trying to deal with
I guess, deal with another right word, find help for and, you know, support
children with airway disorders. You know, it's a lack of knowledge. They just,
the medical professionals weren't taught this. So it's an unknown so they don't know.
You know, I know firsthand, I have my, my ID brace on, which is on at all times to warn somebody
hi, you have to use this particular tube on me if I were to be intubated because you could kill them.
Yes, exactly. And I have the same. Yeah, I just hope they would look at it. I look at what
sure these medical programs know and say we're looking for a bracelet.
Oh, no.
Nightmare we all have. Please check the ID. Please look on the phone on the medical. Go check it out.
And with regard specifically just to kind of give people a little more
information about the idiopathic side of subclavic stenosis. I always get this, this figure wrong.
Is it 93% women or is it higher? Is it 98?
It's 98. Some doctors believe it's exclusively women, but there are men who are being diagnosed.
And it could be that they're the ones, those men have the vasculitis and or it's,
there's a disease. I can't even pronounce it, but the initials are GPA. It used to be called
Wegener's brand new. Anyway, and a lot of doctors say, yeah, no, there's no, there are, there are no men.
But I know for all the research that I've done that it's probably about 2% men.
And whether they've slipped into the wrong group or not, who knows, it doesn't matter at the end of the day.
They're still rolling with the same boat. Exactly. I don't, I don't mind that there's men
popping up because maybe we all have vasculitis at the end of the day. We don't know.
Right. We just, you know, we're called idiopathic at the moment. Exactly. Because no one knows what
to do with us. So, and in the research, I mean, as, as they're trying to determine
where this is, I mean, maybe one day we'll be able to not only identify it, but be able to say,
okay, these are the signs to look forward in children. Yes, exactly. Or it could be a, you know,
a little genetic test to say whether you've got something. I mean, I believe it, it kicks off with,
I think it must be a perfect storm of things. We don't know what that perfect storm is, but
maybe one, one of those things is a hormonal change.
And your body having children. There's a lot of clues that that's involved. What else? I don't know.
A lot of people seem to be triggered by stress or something really major. I mean, there's a huge
proportion of people who first experienced their breathing difficulties around a divorce or a
marriage or a major house move or a death in the family. But then
that could be that it was already there. And they just noticed it because of that they're being a
little bit tighter around the airway and more emotional. So you don't know, there's no,
it's very hard to prove anything. For true. Really, most of the research is not focused on
what it's caused by, but more about, let's try and treat it and make it go away. And that's,
that's the primary focus at the moment, which is understandable. And I could, you know, one,
I'm quite curious where it came from. I'd like also don't want it to come back. So, exactly.
Right. Same boat. And I think another thing that, that we go through that, I think parents,
it's something to keep in mind because kids don't really know or they don't know how to verbalize
it, but environment can absolutely impact your breathing. If you have any sort of an airway
issue, I know for me personally, that's why I had to leave the state of Texas because the air quality,
between the air quality and the heat, I was one of those people that had just exacerbated
and made things infinitely worse for me. So I had to get to where it was cooler and the air was,
you know, had that natural moisture in it. And
then is that something that to see a lot in the group that other people, you know,
that that tends to impact airways as well? Absolutely. Yes. I mean, I know we have,
in California and, you know, different parts of the world in Australia, they have huge fires over
the last few years. And those patients who have been in the smoky air have really, really struggled.
Right. And yet, you know, we have, I think in, you know, some patients live in an amazingly
clean air. We have one person in the group who's in Yosemite National Park. And she's,
her breathing is amazing. I mean, she's like super athlete, lives up on top of a mountain. So
she really is, but she does still struggle, you know, she still has this disease, but
she's incomparable to anybody else. So when she struggles, like, I think anybody else who had to
her same peak flow levels would be going, well, I'm the superwoman. Right.
You were listening to Airway First with today's guest, Catherine Anderson.
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 children'sairwayfirst.org. You can also find a ton of
great resources for parents on our website, including videos, blogs, recommended books,
comprehensive medical research, and more. And don't forget to check out our new Facebook
support group for parents, the Airway Huddle. 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 my conversation with Catherine Anderson.
And well, and peak flow levels, that's something that I think parents with children with airway,
that's something that most of them, maybe not even just them, most people don't really understand
what that is. So let's talk a little bit about that. I know there's some information if people
are looking for it on the Facebook group that you've got. What is peak flow? How do you measure it?
Why is this important? Yeah, so traditionally, a peak flow meter has been used for asthma.
So if, basically, it's a very simple little device with a sort of a little spring in it,
little piece of plastic that you just put your mouth over the mouthpiece,
and you blow as hard as you possibly can. And then you take a deep breath, you blow again,
you do three good heart blows. I sometimes do one for luck, you know, because I can't
don't like where the third spot is, but I don't intend to move any further. And you write down
that number. And there is a well documented guidance on where people should be for their age
and their height and their gender. So women and men's peak flow are very, very different.
So never compare yourself with your husband. Yeah, he's never he's going to be way better,
even if he's struggling to breathe, he will be way better. So, and don't compare against a much
younger person or a much taller person, you know, it's, it's, there's all sorts of things. But
really, it's a very simple guidance of how you sit compared to a normal person. If you had a
normal airway and you were breathing normally, how bad are you? And if you crack it over time,
you're able to plot trends. So if the breathing starts getting worse, you're able to sort of
right recognize that. So there's some great apps, which are free. In the US, it's asthma MD, there's
a an app there, which you can you put all the information in about age, gender, etc. And it
plots a chart for you. So what expected levels are. And then you can buy, I think it's about
$10 or something like that, same $10 and $20 for a peak flow meter. And buy them online or in
pharmacy. And yeah, that's you just plot that number from that into the app, each, you know,
I do buy them daily, but when a couple of times a week, if you can only do that, that's fine.
And you'll gradually plot a little trend and be able to understand whether you're stable,
or whether you're improving or generally, you know, in our season gradually going down.
Yep. Yep. You're on the clock to see when you have to go back in.
That's right. At least you can recognize trends and you can contact your doctor quickly with real
information. I think often people fly off the handle just saying, Oh, I feel bad. And, you know,
it's very hard for a doctor without having a number or how, yeah, how are you when you feel
good? And how are you now? And what's the trend being? Because you could have a temporary drop.
Maybe you have a cold, but it gets better and your peak flow gets better as well. So
there's all sorts of things that will impact it. But if you follow it over a long time,
you'll get to understand what's a real drop as opposed to a temporary drop.
Right. Right. And you're much better than I am. I apologize to listeners now. I don't actually
take my own advice. I don't do it every day just because I did the pressing. I do it twice or once
a week so that I got four good numbers every month to show. Yeah. Yeah. Because that's a
that's a personal psychological thing. But 100% agree because as parents, if you can do this with
your child, that's great because you have something quantitative to take in to say, you know,
something's going on or I see this mostly in the morning or certain things happen in the air or
you can start to see these patterns like you mentioned, which is huge. That's huge. And I'll
put links to all of that in the show notes for our guests. So one of the other things that I know
people with airways struggle with specifically our group, but I know others too as well,
phlegm and mucous. And you hear a lot of coughing. I mean, that's another
another sign aside from snoring or some of the other things that we mentioned on our website
are signs and symptoms, but this perpetual cough. Yes. And mucus. So that's yeah, that's that's
it's an interesting one because it's it will be consistent and it will and generally
in airway stenosis, it's because there is a an area within the within the neck, which is not normal.
So stenosis is caused by start scar tissue, which is very unlike normal neck tissue, which
interior of your neck will be have something called cilia. So a little bit like the inside of
your cheeks. So if you put your tongue around your cheek, you can feel nice and smooth. That's
pretty much exactly what your neck should be like. But when there's scar tissue blocking that,
that's that's gone. And that stops the cilia moving the the mucous up and down nice and easily,
like it should do. So the only way to get it past is the cough. The other thing that's going on is
that whenever there is a narrowing of any sort of a normal so a tube that suddenly has a narrowing
in the middle, the airflow through that narrow bench increases. And because it's going faster
through that bit of your neck, the mucous is drying and becoming a bit more glue like and a bit
stickier. And so that becomes harder to cough as well. So you really do have to kind of cough that
out. And as a patient or a parent with a child, you might be noticing that they're coughing out
sort of lumps of mucous every so often if they can get a really good cough. Or they're struggling,
you can hear it almost growling in their neck. Yeah, it's still stuck. And that's why you need to use
a nebulizer to help put more moisture into the neck and help loosen up that sticky mucous.
It is pretty much magic when one good nebulizing treatment. It's amazing what it does. Exactly.
But there's some other things that I've seen in conversation. And I don't know if
because you work so closely with the thoracic society and some of these other groups, things that
we can do to kind of help regulate the mucous aside from and coughing aside from the nebulizer.
I've heard things about dairy brought up, you know, regulating dairy or any of these other
things that we can do, we could try, you know, kind of its home remedies to help.
You could. I mean, dairy doesn't work for everybody. Some people find it hard to
not have it in their diet. And it doesn't always affect everybody the same way. So
if you do recognize a pattern that you feel that you're getting more particularly sticky mucous
around when you're eating dairy, then that's definitely advisable to cut back. But
not everybody does notice that. So I wouldn't just cut it out of your diet if you're doing fine.
There are particular things which are famous for helping the mucous. So things like pineapple juice.
It's got brumelain in it. You can get tablets with brumelain, which they help to thin the mucous.
So it's a so fresh pineapple juice and unsweetened. Should be sweet enough as it is. It will help.
Yeah. But again, you know, it's like anything that trade off is it's you're getting a lot of a
big hit of sugar and it's not very healthy for you. And so it's a bit of a, you know,
it's a bit of a challenge. I think one of the best things you can do is remain hydrated and
make sure you drink lots of water or herbal teas or sometimes just warm water with lemon in.
Just all of that, just getting moisture or steam even, just a steam that can help as well,
just breathing in warm steam. So all of those sorts of things are great ways of, you know,
doing it at home without any fancy equipment. I know from personal experience, at least for me,
another thing is soft drinks, which I'm sure that something parents have to contend with soft drink
soda, I guess you would call it. I'm not sure what it is in that outside of the sugar, but
there's something in there that I do see a consistent pattern. And I've tested this on both
of my culture and when they've had allergies, you know, nobody gets the dark pepper for a
couple of days. Let's just see what happens. And, you know, it does seem to help a little bit. So
it is kind of a trial by fire, which I'm sure most parents are.
Definitely. And I don't think, yeah, I don't think a huge amount of research has been done on that.
You really just have to follow your gut feel and say, yeah, we know, well, we know that soft drinks
aren't good, you know, even diet ones and everything. They're not going to go for you.
They're an occasional treat as opposed to a everyday thing. And I think,
and it's too easy as an adult to just get in habits of things, especially when they've got caffeine.
It is. I know. So I mentioned earlier, you do work closely with the thoracic society and some of
these other larger ANT groups throughout the world. What kinds of things are in the forefront
right now or that are being talked about or that you can share?
So, I mean, there's been some exciting things over the last few years in terms of a lot of
research. We were still waiting for a lot of things to be published, which is, you know,
just really looking at some of the treatments, because a lot of treatments,
doctors in the ANT and thoracic field, when they're dealing with something rare,
they do, the doctors do tend to be quite creative. As other fields, they tend to develop, you know,
be very careful about developing exact protocols and everybody follows them. Whereas in this field,
things sort of emerge and nobody sort of tends to test them. And one example is steroid injections.
And a lot of patients started getting steroid injections into their neck.
And doctors would, you know, chat to each other at conferences and say, oh, well, I'll take that up.
And that's how they got to do it. And each doctor was doing a different amount and different
frequencies, their patients, nobody was looking at side effects. And so there's a lot of research,
you know, it was particularly over the last two years and this year to really, okay, let's try and
nail some of these things down and really understand what this is doing. Is it actually a helping
patients? And if so, then what are the trade offs? Because generally, there's a trade off somewhere
with treatment is not very often that it's, it doesn't harm in any way. The doctors don't intend
that. But it right, you know, especially when you're talking with steroids, that you can end up with
all sorts of side effects, but you know, the good side is breathing better. So it's hard. So there's
a lot of research in that type of thing. There's been some genetic research. Looking at, we've had
certainly in our group, quite a few mothers and daughters and grandma has been grandmother daughters
and grandchildren, you know, the whole families or twins who've all ended up with this airway disease.
So there's been a bit of work with them to try and understand and pinpoint, okay, maybe there's a
genetic link that all these people have. I haven't heard anything about the results and maybe there's
nothing to see. It would be really sad, but you know, every time you're looking into that side
of the thing, you hope. There's also quite a few sort of different drug trials going on. So there's
been this one going at the moment. I can't tell you what the drug is because we don't want people
to leave it out and go and buy it. But right, it's a double blind trial. So some patients are
getting a placebo and some people are getting the treatments. And so that's got to go on for a
couple of years to see whether there's any real difference between the two groups. So
yeah, so there's quite a few exciting things going on. There's another doctor who I'm aware of,
and he's kind of in the early stages with animal trials, I think with mice, but he's coming up with
a new skin which could go into your airway to replace the scalp tissue and it would blend
nicely with everything else and it would have the mucosa. Like a grafted. Which would be perfect.
Yeah, it's very hard to achieve. And yes, but he's feeling very hopeful. So exciting.
I mean, it really is exciting. There is some exciting things happening which could potentially
have a really big difference to our lives. If you know, once they get to that stage, it's just
medical research is not fast. Everybody wants quick results and every single paper that happens
does take us to the next step and it's something that people can learn from and refer back to.
Right, we build on it. And while as a patient, I want it to be fast, I also
please take your time because I know we've tried some things like transplants, which people always
ask me why you just get a trachea transplant. Well, because it doesn't work. They've tried,
it doesn't work. So please take your time with the research and we'll wait. It's all good.
Yeah. The other thing that people often talk about, these helpful friends that we have,
who really want to fix it for us. They really do. Yeah, they say, oh, why don't they just put us,
you know, I've just been your neck and that is horrendous. You know, it really doesn't work.
It works on a temporary basis. So up to a month, I think, you know, with being watched very carefully,
but not as a long-term solution. I've heard so many horrendous stories over the last 12 years.
You know, infections being happened or the stem moves creates more scar tissue,
damaging airways, creating more problems. And it's, yeah. So yeah, to be here, a doctor
suggesting is then just saying no, I would like to send a opinion. Yeah, I was actually, I was in
that, that, that latter group that you mentioned. You know, we did the first one and they actually
attached it to my throat, which was interesting because every time I swallowed my throat would
kind of collapse. You could see it and that kept getting clogged. So then they put in another one
that had these little prongs on it and it decided to start sliding down my throat one morning. So
yeah, the EMTs were called or the EMTs, the EMTs and, you know, rushed to the hospital to remove it.
But like you said, it leaves damage. So it's a learning process. They were trying. So I agree.
I'm in the no stent camp myself. Definitely. And yeah, every, every top doctor I spoke to
said no, they block, they move, they create infection, they damage the rest of the airway
and sometimes irreparably. And yes, it's, and the tissue can come. I've even heard somewhere they,
they, it's supposed to stifle the tissue, right? Cause it goes right on top of it. The tissue has
grown around it. Yes, exactly. So it's, it's not a good thing. It's not a good thing and definitely,
you know, don't go down that route to that day. Yeah. Yeah. It's not worth, not worth the damage.
Yeah. It's not worth the damage. So and on, on the website within the group, you do mention some other,
which I'll make sure we have links to everything in the show notes, but
there's an airway defects group that you mentioned that we'll put on here. And
Children's Airway First does have a parent forum on the site. And this week we're launching the
Facebook version of that group, the airway huddle. So we'll be something else that parents can
reference. What other, you know, over, over the past 12 years, what are the resources have you
found to be really good go to resources? You know, when you're trying to research signs and
symptoms specifically around airway disorders or airway issues? I guess some of them, I mean, I'm
a member of research gate and you can find that on Google. And that's a great way of
finding papers. But often papers are very hard to understand for the average person they are.
Yeah. I mean, some of them, I, you know, over time, I've learned a lot of medical language,
but some of them I just, you know, I'm looking up every other word trying to work out what they're
trying to say. And that's in the abstract, let alone the actual paper itself. So I mean, that's,
that's a good stuff. If you have an academic mind and are willing to read things, that's a good area
to look. I mean, in the resource that we provide on the group, which is called the rough guide,
we've got a great bibliography of papers to look at in the back of that guide. So it's got a huge
reading list of some of the things that we've referred to to create the guide and the guide
itself has been rewritten into patient language just to make it easier. It doesn't look doesn't
read like a medical paper, but it's all been approved by doctors who often give it to their
trainees and their, you know, anybody in their team to say, this is what some prosyx stenosis is
about or aero stenosis and the symptoms and the myths. And, you know, it's a great summary for
anybody to learn about it really. So yeah, it's incredible help because all the medical terminology,
especially when you're first finding out about any airway disorder, it's overwhelming.
It's like learning a new language. It is. It really, really is. It is. So one of the things I do
for all our guests at the end of every episode is just open up the floor to our expert guests.
What kind of message or what would you like to say to parents to leave them with with regard to
the state of airway disorders or having to come to terms with and find help for
their child with an undiagnosed condition? I think do your research and try and find out
who the best doctors are for children's airways. You know, there will be documents out there. If
you're looking at papers, if you do know what's wrong with your child's airway, you've got a name
for it, I would say go through those, go to research gate and find out who are writing the papers
and what names are coming up in the author list. They might not be the first name, but
you know, often the professors and the top people in the field will be maybe three or four names down
on the on the document. But if you're seeing consistent name coming back in again, you think,
well, okay, they seem to be an expert in this field. So collect information like that, do research
on that doctor. If you have to travel and not go to your local doctors, you know, then do so if you
can. I mean, it's hard. I know it's prohibitive, right? Cost sense, but if you're able to do that
and find the best person, then you'll get rewards in terms of the health and the of the airway and
being looked after and probably skipping a few steps. And be tenacious. Don't
say, no, if you know something's wrong, trust your gut bill. There's a reason that, you know, it's there.
It's dates back to our cave woman days. Yeah, exactly. It's there to tell you when things don't
feel right or, you know, it's not to be believed. So if someone keeps turning you away and saying
it's just a cold or it's a group or whatever, it's and you don't feel like it is, you feel like
it's different and there's something different there, then keep chasing an answer. So don't just
let it go. Yeah, I love that. And I would also just add to that, find a support group, you know,
from personal experience, finding a support group that is dealing with the same thing you are.
I can't even put into words the blessing that that is just the peace of mind that provides.
And it really does open the doorway to knowledge. It certainly does. Yes. And it's a as a collective,
you can move forward. I mean, my career has been in research, but not traditionally medical research,
but the last 10, 12 years, I've been a part of 11 or 12 medical mappers, including two where I was
supposed to offer. So, you know, my market research career, which is all about making banks and
telcos, well, money has now been turned to good. And where it's about progressing knowledge in the
in the airways, the nurses field. So, which is a good thing to be involved in and help me learn a
lot and get to know some good people. And I for want to appreciate your dedication to it. So thank
you for everything that you do. And I appreciate you being on our podcast today. Thank you so much.
Yeah, thank you for inviting me. Thanks again to today's guest, Catherine Anderson for sharing her
story and 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 comment about what you enjoyed the most. You can stay connected to the Children's Airway
First Foundation by following us on Instagram, Facebook, Twitter and LinkedIn. If you'd like to
be a guest on an upcoming episode, shoot us a note via the contacts page on our website or send us
an email directly at info at childrensairwayfirst.org. 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 just a little bit better. Take care, stay safe and happy breathing, everyone.