I think that I'm having a diagnosis of he DS or HSD.
I think one of the things that it really does, which is
helpful, is it helps people know that they're not imagining
things. I think that's the most
important thing. Hey, I'm hyper mobile and if
you're listening to this, I'm guessing you might be too.
Hi, my name is Alex and I'm your hyper mobile host.
And today we have on the fabulous Hannah Hannah, also
known as the Histamine Queen on TikTok.
And I think I helped you come up with that name you named.
Me. Thank you.
Hannah's here today to interview me.
So we have a guest, but also I'm the guest.
So this is kind of like a meta episode and this is episode 1 of
the season and it's being filmed a little bit later than the
other episodes for any of you listening.
So we've kind of had the chance to go through now and see what's
really coming up and what's really important and, and like
kind of the why about all this. But before I start to
micromanage everything. So I'm going to take my hands
off the wheel and let you go take it away.
I feel the weight of the responsibility.
So, Alex, I'm in charge today. OK.
So we're going to ask you a few questions and I've enlarged the
text. Yep.
Because my grandma ways I continue, I've got babyface and
grandma hands in true HEDS fashion.
That is the life. Did I ever tell you my mom was
the director of a retirement home for marketing department
purposes. And when I was age 12, I was
like going to bathrooms, looking at grab bars, just like, wow,
this accessibility stuff is so nice.
So we we are all old on the inside, but young on the
outside. Definitely.
Yeah. Grandma at heart.
So, Alex, I'll mention I call you Alexandra.
I think Alex, because that's what I don't know, that's what
everyone calls me online, but. I've got some questions prepared
from you today. They were collaborative, though
we did talk about. We did, we did, but I would like
to know, why have you been so quiet on social media lately?
Oh, getting to the heart of the matter, this, The last year's
been rough, rough times to be entirely honest.
So to start off with, I got my heds diagnosis so I now
officially have high for mobile download syndrome.
And people always like, is that a good thing or a bad thing?
It's kind of just like a thing. Like, yeah.
It's just I've known for a long time.
Obviously with my work with patients, I knew that I met the
diagnostic criteria and there are some reasons that it kind of
became time for me to really prioritize pursuing that.
As you know, in the UK you usually have to self fund these
things. Yeah.
So I was like I want to renovate the kitchen but also like.
Not fall apart. I know I want to not fall apart.
So over the last year, just a few things have made that more
of a priority. So going back to things like the
last year, I've just been really tired, in part because of the
realities of living with a condition like HEDS or HSD.
But also I decided to do things like write this book.
Yeah. So as you know, the book is my
passion project. It's called Help.
I'm Hyper Mobile, like the podcast your How to Guide for
HEDSHSD and Life in a Hyper Mobile Body.
Yeah. And I had this idea that it
would be so simple to write a good nonfiction book because I
want this book to be like a survival guide almost.
I want it to be something that people can refer to that's
mildly entertaining, relatively useful, and that is properly
referenced so things are actually factual and that that
is not easy. So there is a, we're in the
final process now of copy editing and getting all of that
done, book formatting and so on. I wanted the book out on January
1st. That's not going to happen.
It's been pushed back to what's looking like a March.
Yeah, publication date, but yeah, that has been where I've
been hiding. And you very graciously let me
stay with you and Whitby and lock myself in your.
Attic. The attic.
That's where most artists do their best work is in the attic.
And that the view of Whitby Abbey was very inspiring and and
you saw me like you would come up and I'd be on the bed like
hunched over typing until my fingers like they would get cold
and painful, to be honest. But nothing is going to going to
stop this book from happening. So you know how you've you've
seen it first hand. Yeah, and I've seen, I've seen
you cross legged on my bed, which I was very impressed at.
Yeah, I used to sit cross legged until the knees gave up.
Yeah, it's it's hard to find a position.
The truth is every position hurts you eventually.
So I will you'll see me fidget. Like during these episodes, I
literally swap how I'm sitting cross legged to try to not wear
out or overly stress one side or the other.
My bad writing position or studying position was always
lying on my front. I would do it on my elbows, like
writing or typing. I think that's what really
irritated my neck growing up, especially being a student.
But yeah, do you remember? I'd go to the library, to the
Whitby library and put my compression leggings on.
Yeah. Because sitting with legs down,
that hurts as well. And I would just write there.
And you'd be like, when are you coming back?
And I'm like 2 more hours. What would you like for dinner?
Basically, So that's one place I've been.
Last year I was also diagnosed with cervical intrapithelial
neoplasia, which sounds like it sounds really scary.
It does. If I did not work in the
healthcare field and I would have been freaking out more than
I did. But it basically meant that I
have or that I had precancerous cells in my cervix, which for
me, because of what happened to my mom, which we'll get to in a
little bit, is really upsetting. I think, I can't remember if I
called you ugly crying, but I was like very upset by this.
Because when you go for your Pap smear, they find you have
abnormal cells. You then need to go for an
assessment, a colposcopy and a biopsy.
So when you hear scope, that means camera.
So they take a little look at it, see what's going on, and
then the biopsy is they they take the tissue.
Yeah. And that was a whole stressful,
upsetting experience. Yeah, I'm all good now, so
nobody needs to worry. But that that kind of did really
take up my whole summer last year just in terms of the stress
and anxiety that I felt. About.
Yeah, Well, I mean, as I say, we'll talk about, Yeah, your
mom's story later, but I can understand it.
It's. It scratches on a wound that's
very close to the surface. Even if it's not, you understand
it's not the end of the world. Hopefully.
Yeah, it's end of the world right then.
It's it's this weird mix, like I hate being a patient and I was,
I actually really nervous for today.
Yeah. I like to be in control, Yeah, I
like to be the one in charge. It's really weird not not being
in charge in situations. But yeah, it's like I was
looking at the research, you know, knowing that I'm not in
immediate, you know, barrel necessarily, but this gut
visceral reaction you people get sometimes to certain health
issues, it it gets to you. Like I was up to like 2:00 AM.
So it's just sobbing, you know, especially before the procedure.
Yeah, I do have to say as well, too, for anyone listening to
this, I obviously I am on TikTok, I'm on social media, and
there are a lot of people talking about their experiences
on there as they, you know, are absolutely entitled to.
Yeah, I, I learned so much from just hearing from.
Yeah, from patients. Yeah.
Like things about different, changing different ports and all
types of medical things that people have to manage that I
would never know about. Like, I just learn through
seeing what people actually experience.
But I have to say, some of the content, really, it did make me
a bit more stressed because people were talking about how
painful it is having the biopsy done.
Yeah, I have to say for me, I don't know what's wrong with my
cervix. Maybe, maybe I don't have any
nerves in it. I don't know.
It was OK. It was not like as bad as I
thought it was going to be. In terms of pain, given that
we're in the UK and they don't tend to do any pain management
stuff. I had nothing if I was managing
the procedure myself if I could choose what to have.
Like I wish that they just given me like a mild sedative the day
before or something. Yeah, they do it in different
countries. Yeah, because the anxiety was
bad. The thought of the whole process
is like, terrifying. Oh, and I forgot to be medical
disclaimer again. We'll put it in the text.
This is not medical advice. I don't even know we're going to
talk about this episode, so I'm just going to put a disclaimer
on everything. There might be swear words.
There might not be. We're just going to wait and
see. But yeah, this is not medical
advice. And listen.
If it's appropriate for you, listen.
As I always say, I am just some chump on the Internet.
Yeah, I just, I just go on my merry way and go.
That looks interesting. That makes sense.
And then? Well, I call you.
You're an expert patient or knowledge.
Yeah, you have some lived experience and we'll we'll be
interviewing you for later in the season as well, which I'm so
excited about. But yeah, that that happened.
So that health issue happened, my gut issues.
So as you know, I manage my muscle and joint issues really
well given that it's my work luckily.
But gastrointestinal issues for HDS are not fun chaos.
I have not cracked the code, no, no.
So. But there is no code to crack
apparently. There has to be a.
There must be a code. I have not cracked that yet and
that is something I get a bit embarrassed talking about it.
I do actually talk. In one of the episodes the guest
I had on a patient we had pre episode talk and I was like do
you want to talk about gastro shoes or not?
How far do you want to go? We went far.
We did talk about the time that
I did not use the toilet for three weeks, which was like
humiliating as a 15 year old and confusing and like, it all makes
sense later. But yes, you can look.
Well, yeah, and have really problematic things happening on
the inside. Absolutely.
Speaking of which, take it away. All right, so Alexandra, how
would you explain HEDS to somebody who hasn't got a clue?
Because I had this question earlier when I went to visit my
auntie and another of my relatives was recently diagnosed
with HEDS, which is cool because I played a part in her diagnosis
hopefully. And so and my auntie said, well,
how do you diagnose someone with HEDS?
Like what? What's the deal?
And. Well, there is a whole chapter
in the book on this. And I said, where do you want me
to start? Absolutely.
So you saw me, I'm going with the book, right?
You saw me happy some days and really sad and angry other days.
The diagnosis chapter was a stressful and frustrating
chapter to write for sure. So for the full depth answer,
read that when it comes out. But here's the short answer.
There's kind of two approaches you can take with this question,
right? From a medical perspective, we
have a genetically inherited. So we know it's inherited, we
know it's autosomal dominant. So if a person who's affected
has a child with someone who's not affected, there's a 50%
chance that any child is going to present with heds or HSD.
We also know that it's a connective tissue disorder and
we know that connective tissue is in every system in the body,
which is wild and partly why it gets so disorienting.
So we can see all these medical things, but I think it helps
sometimes to think of it more in a, a different way in terms of
making it make sense to patients or make sense to people where
we're not talking in a medical context, like your grandma or
your aunt or whatever, Like they're not a doctor, right.
So when I'm trying to explain it to to family, I'll say things.
When I'm talking to patients who are trying to start to
understand it, I'll say things like what I said in an early
video. So when my first viral TikTok
videos, I'm wearing a green T-shirt and I talk about my
shoulder being homeless. Yeah, I don't know if you ever
saw it. I don't know what I saw it, but
yeah, I've heard you say that a lot.
Yeah, it's like this feeling out of place.
So if I'm trying to describe what it actually feels like to
someone, I would say that having HEDSHEDS or HSD, it feels like
everything is kind of not quite where it should be all the time
or not quite working all the time, which is really difficult
because when you look in the mirror, you might look like.
You could even look. Great, right?
Or you might also not look great and that's OK too.
But it's like it's the the outside sometimes does not match
the inside with that invisible illness or invisible disability
component. Another analogy I like to use is
I think of it like an old Victorian house.
So I didn't get this till I moved to the UKI lived here for
12 years now. But these old Victorian homes,
there's like when you if you buy one and be careful if you do.
There is stuff, yeah. I live in it's predates.
Victor, it's so cute. But I feel it, it falls apart,
but it looks fantastic. Yeah, yeah, There it's it has
charm. It does we.
We have. Crooked.
Charm. What's the word from Better late
than single? The phrase unexpected.
Unexpected charm. And the pillow is unexpected,
better late in single style pillow by the way.
But yeah, unexpected charm. So the person with HSD like
look, they can look a certain way, but on the inside sometimes
things are not quite as they should be.
So going back to that house analogy, there's probably some
electrical issue and when you fix that, there's some plumbing
issue. And when you renovate the
kitchen, you need to go renovate the bathroom.
So to use myself as an example, it's like I had to think of
dealing with PCOS early on, which again is, you know, I'm
not saying it's the same as HDS, it's another condition I
believe, and I always mix this up.
I think it ends up being classified as a Co occurring
condition based on research, but please check the book.
That's where everything is referenced and cited
appropriately. But it's like you'll deal with
one health issue and then you have another.
So maybe you have M glass or some issue like that and then
you'll deal with that and then another thing crops up.
So it's always this like kind of firefighting that never.
Talk about it like the house is on fire but it's like 16
different rooms. Yep.
And if you try and fix every room at once, you have no place
to live. So I talk to patients like when
they're like, Alex, should I see the cardiologist,
gastroenterologist, you know, respirologist, whatever.
I'm like, you can. Yeah.
But we kind it might be better to take it one step at a time if
we're trying to manage this in a slow and sustainable way and
also figure out what helps and what doesn't.
Because people will try and do everything and we don't really
know then what's actually made a difference to their symptoms and
what hasn't. It's the strategy of it all is,
is it's incredibly daunting. So then you kind of scale back
and you go back to basics. Then you realise, well, I can't
put one room out because the other 16 are raging.
But then you've got to kind of dampen down them all a little
bit so they don't spread to the next room.
And it's the, the strategy, I think is, is missing a lot that
I've as a patient, I've struggled with because you go to
1 specialist and they say one thing and they go right, this 10
out of 10, what you've got to do.
So you do that, then that affects that thing.
And then we're not addressing that thing.
And then, well, that undermines that.
And it's just like. And This is why we need medical
doctors who will help with more of the coordination of care
management because patients ask me this and again, I will give
answers within the scope of my professional expertise.
So for anyone who doesn't know this yet, I'm not.
I'm still not a medical doctor, believe it or not.
When will you take one for the tea?
You know, I bet like people tell me like don't like.
I have a nice job. I think you.
I get to mind. I get to sleep.
Yeah. Like, I don't have to, you know,
I don't deal with certain bodily fluids.
I love my work, OK? It's like we need people who
look at patients and help them kind of coordinate care and
triage because patients, even from a musculoskeletal
perspective, they'll come to me and say, Alex, my shoulder
hurts, my knee hurts, my hip hurts, my neck hurts.
Where do I start? And it is within my scope to
say, OK, let's focus on this or let's get some medical imaging
to kind of figure out what we need to prioritize and how.
So I'm going back to what you said about strategy.
It's paramount. Yeah.
And I don't, I honestly, some I thought that I do have often is
like, I don't know how people cope when this is not their job
or their obsession. I don't know if you can say
about me, but it's like I think about this benevolent obsession.
Yes, it is. Dave is like, Alex, please no
work talk. Like when we have dates, there's
a rule I last like 2 minutes before it gets broken.
But yeah, it's like, I don't know how people cope when they
don't know anatomy, Physiology and they haven't studied this in
detail. It must be It's like living in a
home and everything's breaking and you don't know what to do
and the addict's haunted and. Then the instructions are in
like Chinese. Exactly.
And I don't speak Chinese. Yeah.
You're just like. I've got no hope.
Yeah, 100%. But yeah, that's how I describe
HESHSD. It's like it's just, it's a
genetically inherent connective tissue disorder where we have a
lot of different things happen all at once.
Yeah, people can be affected in a variety of ways, and the hard
thing is it's same but different.
You know, right now there's a lot of heterogeneity.
If we look at people with HDS or HSD, some will be more affected,
less affected, differently affected, or they'll be okay,
but something will happen and then they'll be less okay.
There's a lot of moving kind of parts and that's why we see
people, you know, like me who can go do all the gym or sporty
things that I I do and work like more than full time hours quite
frankly. And we will see other people who
also cannot work and who cannot go to the gym.
So that's why we see the spectrum.
But I mean, even within your own story, you weren't able to
perform at that level. Oh no.
Entire life. Oh, there was a dark.
Time. Yeah, exactly.
It fluctuates from person to person, but within the person
too. The UPS and the downs.
I call it riding the UPS and riding the downs.
And when you you have an up, I think it's critical that
patients are supported in making as much progress as they can.
So when I have a patient who they're feeling OK, they're
ready to go. I'm just like, let's try.
I'm like, let's go and be make sure to not make mistakes.
Let's make sure we get progress, but let's take advantage of this
energy that you have or this time or this kind of improved
management of symptoms. Let's let's make hay while the
sun shines, knowing that there will be at some point a down
again one day. I think I told you when this
happened. So fiber has been a very
difficult thing. Again, I don't know what the
answer is on fiber. You don't ask me.
We need a nutritionist on here or something.
But I took fiber for a few years.
It helped. Then something bad happened.
I stopped taking it. Gone into the Fodmaps thing, low
fiber, blah, blah, blah. Got back on the fiber on the
psyllium husks in my case and then now.
Well, cursed. Wait a bit.
I know, but we're all, we're all different.
We're all different and two cilium 2 cilium Musk fibers was
working great, but then it was like if 2 is good, three could
be better. No, yeah, 3/3 was worse.
Okay, so it's like, and again, you would think that's just a
small thing. Oh, I took one too many.
You know, cilium Musk capsules. I was wrecked.
I almost had to cancel clinic that day.
I was like out of it for a week. So it's like these little things
can have big consequences. Imbalances are so much more
it's. Like a knife edge.
I did. You came, I think you came to
the workshop this summer and I had this graphic of someone like
walking a tightrope and then alligators in like a Canyon
below. It was a very artistic.
I was gonna I was impressed with the artistry.
Thank you. I'm I'm good on Canva.
But that's what it feels like you when you have HDS or HSD.
You're walking this tightrope and it's so narrow, and even
though yes, you can walk fine when you're on it, one small
step the wrong way and the consequences are way worse for
you than someone who doesn't have this condition or something
similar. I definitely cosign that it's
difficult to explain sometimes when you say yes, but you I
always say about I'm always calculating everything.
Well, if I take 1 cillium husk too much, that's Thursday Friday
are out because disaster happens.
Yep. So better you only eat this and
then because for somebody else who doesn't have the same issues
that that I have, what cillium husk is not going to be an
issue. Yeah, they'll be fine.
They'll just they've taken 1 capsule too many.
That shouldn't be like a huge like my week is ruined thing to
do. Exactly.
Yeah, exactly. It's, it's, it's the the my week
is ruined type of aspect that is, is difficult.
Yeah. But yeah, I I think it's it's
useful to get some knowledge around how HHEDS works because
my childhood make more sense. Even though I wasn't
particularly affected, it does help to know.
Kind of more of the picture what what was yours like?
Did you have issues? Yeah, so for me, I had growing
pains. My earliest memory is crying,
like sobbing because my knees would ache and then ache and
ache. And I wish my mom was alive and
I could have her on so we could talk about this.
But like, they would ache terribly.
The pain was agonizing. Like, if I was teleported back
to wake up in Alex's child body, I'd be like, shoot, I don't want
to go to sleep tonight. Do I be fear of the pain?
Yeah. And she would tickle them and
joke about amputating them not to be, like, bad.
I mean, because, you know, children, they have weird sense
of humor. And I thought it was hilarious
that my mom was, like, tickling my knees.
Like, I'm gonna. We can take them off if they're
causing problems. But for me, you know, as an
adult, thinking back about my earliest memories being pain,
that's kind of like dark. Yeah, it is.
Yeah. That is my earliest memory.
Should be something, you know, happier, nice.
It shouldn't be pain. And I think that does affect you
throughout your life in different ways, certainly.
So lots of pain. I had other issues.
So I actually like, I don't know about the details on this.
Again, my mom's not here, but basically my airway was quite
occluded when I was sleeping. So my tonsils were so big, I had
to have an emergency tonsillectomy.
And again, I know that tonsil removal, like, sometimes people
think it's overdone or whatever, But in my case, it was bad
enough. Like, I, my mom would notice I'd
stop breathing at night. So I had to go in immediately.
And we do see these airway issues.
We'll talk about it more probably in your episode.
But there was something not right with my airway.
Yeah. I then grew up and I was just
trying to be a normal kid. But when you look at photos, I'm
covered in bruises. Like, I don't know how people
were not, you know, concerned myself.
But I know why because my mom also grew up covered in bruises,
and my grandma, because it's a genetic condition.
Yeah. But yeah, I was covered in
bruises. And I would really struggle with
a lot of gut issues as well. So my tummy would hurt.
And I was one of those children diagnosed with IBS and
gastroesophageal reflux disease age, like, 10.
Yeah, that's not right. Like, kids who are getting
diagnosed with these things, they need to be suspicious.
I never saw a gastroenterologist.
I never saw anyone. And it's just, it is staggering
that you didn't see a specialist at that age to be developing
that type of thing. Yep.
And it gets worse. Yeah.
So I've also fractured like 5 bones.
It was an 11 month span in September.
I fell, Sorry. I took a step.
I literally just stepped behind me playing football.
I just took a step. That was all I did.
So a non traumatic onset and I fractured my growth plate in my
right ankle and my fibula. I then and that made that bone
not grow as long, which will be relevant in a minute.
I then fractured my growth plate in my wrist and a little I
chipped a piece off another bone and that happened in February.
So three months apart. I was having two pretty serious
fractures. My right arm also didn't grow as
long. So when I hang off bars, we're
always trying to find ways to kind of adjust with shoulders.
It's easier because of the joint to compensate versus legs where
it's harder if you have a short leg.
And then I also chipped, I sorry, I fractured my a bone on
the outside of my foot again, but I had, I fractured 5 bones
in a nine month span. Why was I not referred to
someone for a potential bone density issue or something going
on? Yeah.
So again, no medical care there. And then we get to the like kind
of teens to wrap this up. I had I had that episode where I
did not, I could not use the toilet for three weeks and to
not be referred for any care then and do not even know how
serious that was. I know I was just like, yeah,
1415 living my best life. It was summer.
I was talking, I remember talking with my close friends
being like, what's the longest, like you, you know, trying like
my friend Aaron, I'm like, what's the longest time you've
ever not used the toilet for, you know, trying to do some
child research. Basically.
I like the Internet. We had like Ask Jeeves or
something. We didn't have ChatGPT.
I was just trying to survive. I know.
But then to not be referred for any care again was quite bad.
And I had my jaw surgery. So my jaw was born in a way that
was really problematic in terms of function.
I couldn't eat a sandwich. I couldn't eat an apple.
I would use my front teeth to hook chunks of the apple out
like this and then go like a Little Beaver almost.
For those of you listening, you can watch the video and see a
nice reaction. But yeah, I would be, like,
hooking pieces of apple out because I couldn't bite.
Yeah. And my whole life I just wanted
to like, eat a sandwich and not have the filling fall out
because it's really depressing you.
Can't do it. It's not ideal, yeah.
They had jaw pain and so on. And when I go to the dentist,
they'd always use the child size retainer.
And they're like, oh, it's so weird that you're like, you
know, you're getting older, but we still have to use the child
size retainer. Yeah, because I have a narrow
high palette, which look at the HDS criteria.
It's there. Anyways, so I had all these
things happen. I had what some people will call
a double jaw surgery. That's kind of the common phrase
you see online where they broke my lower jaw, moved it forward,
cut through my entire upper jaw, moved it up.
Scary. I did not realize how major that
was at the time. Just as well I I sometimes I
think of the I'm glad I didn't know something I know.
This is I'm so pro informed consent, but also if I had give
and also they had to get my wisdom teeth are going sideways.
They had to like I think they used to chisel, but like, yeah,
that was like a six hour operation Major.
I'm happy I had it and I would do it again.
And I'm going to explain why I hesitate to say that a little
bit, but if I'd actually give an informed consent, I don't know
if I could have done it. So it's like I think I still
would have done it, but it's it's not easy.
It's not none of this is easy. And again, I'm not saying that
necessarily, you know, the procedure I had or the specific
jaw presentation I had is linked to HEDSI don't know if there's
clear research on that yet, but we do know that having a high,
narrow, yeah, certainly is linked to HEEDS as per the
current diagnostic criteria at least.
So I had that jaw surgery. And again, that's fine.
Like that was managed, but five years after that I had an
infection in my bone. Yeah.
And it's very rare that this happens.
It's like something like one in 2 million, but a little some.
Basically at the time of the operation, probably a tiny bit
of bacteria got under one of the screws or something.
Again, I'm not an expert here. This is my understanding.
OK. And overtime, that infection was
kind of developing, but my body encapsulated it.
So it was kind of contained. But five years later, my body's
ability to cope with that, we have stopped.
And I developed pain. And I remember I was up all
night. I was like 20 at the time, and
it just wouldn't stop hurting. And it got worse and worse and
worse, and it was profoundly tender.
And I was taken to the dentist. He said, Alex, you're always
anxious. It's from grinding your teeth,
you know, this type of dismissive thing.
I then deteriorated. I had a fever of 40°.
I was being sick, like every half.
Hour in dress, isn't it? Yeah, you don't realize how
dangerous it is until you gain someone standing late to you.
Like I was so close. I didn't realize two years after
that, so it gets worse because I'm my mom takes me to A&E.
She has triple negative breast cancer at the time.
Her cancer is terminal. She's not well and they
essentially tell me I'm a drug seeker and to go away.
I cannot get over this genuinely.
I know I am. I wish I had gone in my medical
files at the time I didn't and they destroy them.
I think after seven years in Canada.
So I don't even think I could access these anymore.
But it's shocking that I'm there as a 20 year old being like, hi,
I had jaw surgery like four or five years ago.
I have metal in my jaw. Could this be related?
It's it's bizarre. Yeah.
And I couldn't walk. I couldn't.
Like I was literally having febrile convulsions.
And it was only years later when I did my osteopathy degree and
learned about bone infections and how close my brain is to
this. And I was like, oh, shoot, that
could have gone really badly. So I am someone.
And again, we don't know if there's an increased rate of
this type of with post operative infection and some with HEDSI
don't want people coming away from this thinking that that's
necessarily the case. But I just became so used to
being told it was in my head. I was told as a child, I'm too
sensitive, I'm a prima Donna, I'm drama queen, you know, all
these things that it got to the point where I was just like,
well, guess this is just my body being my body and I just like,
gave up. And I think you also if if you
don't have an ego that's out of control, you do take that on.
You think, oh, well, I must be at the top.
I must be a nervous. It's it's a reasonable thing to
do. It's reasonable.
Everyone's telling you that you go, you take that internal, you
go. I must be acting a bit over the
top at the moment. Especially when you're a young
person and it's the people in positions of authority like your
parents and healthcare providers who are reassuring you and
telling you, you know, we've done these tests or they've
assessed you in some way. Like you, you go to the hospital
to be safe. And to think that you could be
treated in a way that makes you not safe is wild.
On top of all that, which I forgot to mention this the the
dark time. So yeah, all that stuff was
traumatic. But like honestly the worst
thing I've probably been to. Yeah, and this is how absurd it
is. Yeah, That stuff.
I mean, I need to die. I, I it's how much of stuff like
this is what really annoyed me. Yep.
What really really was bad so my mom was diagnosed with triple
negative breast cancer when I was about it was she always kept
getting diagnosed or it became metastatic or ever like on my
birthday or around that I I don't like my birthday.
January sucks. But anyways, basically I was
like 17 turning 18 or somewhere in there she was diagnosed with
triple negative breast cancer stage 3B, which I think they
should just call it stage 4. But anyways, and then I, I
started to have worsening health symptoms.
Now, whether this was related to dealing with stress from my, my
mom's health or if this was, you know, something else with, with
me just aging or the stress of being a student, who can say?
I think when I look at patients, we're sensitive beings.
Everything affects us to some extent.
Am I going to feel pain more because my mom, who I love is
dying? Of course I am.
But is it going to make pain come from nowhere?
Yes. No, it doesn't.
Like, you know, and maybe there will be some study out there
which shows like there will be some study they'll disagree with
me. Like I've never had a de Novo
health issue like out of the blue that I could solely
attribute to stress personally, but I had some headaches and
neck pain at the time. I'd always had that heavy head
sensation in school. I would never sit upright.
So I'd lie down on my desk like this or I'd go like this.
I used to sit like this. Yeah, yeah, I would do every my
binder. I'd always have the soft binder
so I could use it as a pillow. You know, the fabric ones that
zipped us Smart. Exactly.
But yeah, I am. I was going through all this and
my neck pain would get worse and worse and worse.
And I'd had horrific shoulder pain as well, which I've talked
about on social media. But it was that coat hanger
syndrome, what they call it, basically.
And there was a point where it started to progress into these
headaches. And the headaches I would
describe as 9 out of 10. I hate numbers, you know that.
But like I I, it was a very bad pain.
It was honestly awful. I would rate it up there almost
with how I felt when I woke up from my jaw surgery, which is
quite high given the whole face. Yeah, take and how how old are
you at this point? 2021 of the headache, so kind of
jaw surgery was 16 and then headache on.
So it was like late teens, early 20s to kind of mid 20s ish.
But the headaches would. I remember the first time it
happened, I just came home and went straight downstairs.
I lay in a dark room with a pillow on my face.
Just couldn't watch anything, couldn't listen to anything.
And you remember the first time. Yeah, yeah, I remember.
That's suddenly onset. Yeah, 100%.
The first time I had it, honestly, given the fact I'd
never had headaches and that was the worst headache in my life, I
probably should have gone to hospital.
And that's the problem. When you're constantly told that
you're overreacting things, you don't act appropriately
sometimes. Yeah, I've never thought about
that before, but I'm really lucky that that headache wasn't
something serious because I never had headaches as a child
and I never had headaches in my early teens.
But I had these headaches start almost out of nowhere, you know,
and probably they had been building up gradually, but I
probably just blocked them out until it became too much.
And it would feel like my eye was being strangled, my jaw, I'd
have horrific tooth pain. It was, it's a trigeminal
neuralgia, probably, right. And I have not had an official
diagnosis of this, but I can tell you that I would get the
tooth and jaw pain, which terrified me, having had a jaw
bone infection as well. So I'm very sensitive to that
type of pain. But yeah, those headaches
started and they really, if I, if I was ever disabled, you
know, at a point in my life where I truly could not have
worked, had no quality of life and was really struggling.
It was those neck pain, the neck pain and headaches because I
couldn't leave the house. And I just even like doing
anything other than lying in bed in a dark room with a pillow on
my face. Like things like eating and
using the toilet like that was really, really difficult and
honestly thankful. Life just stops.
Yeah. And that's the problem, like,
especially when life stops, you can't actually function to seek
help sometimes. Yeah.
So you need a support. It never even crossed my mind.
I know I know. Also I haven't mentioned this
and this is like a trauma dumping episode.
So you, you all got warned with a disclaimer at the start.
Basically, my mom had gone to the GP, like, she interacted
with her GP on six different occasions for a year and a half
about the lump in her breast. And I saw her be routinely told
it was anxiety, it was menopause symptoms, It was in her head.
You know, people get lumps in their breast all the time.
Don't worry. And it wasn't a cyst or
imaginary. It was, yeah, basically almost
stage 4 cancer. And when they found the tumor,
it was 9 by 13 centimeters. And my mom and I, like, I'm not
the most busty person, we shared bras.
And that means like most of her breast was tumor, but at the
point it was found 9 by 13 centimeters.
Very big. It's big.
So for that to be missed, you know, and for the specialist she
saw to say like, you know, these are people who were working in
less developed countries to be like this.
You know, you would have had better health care in other
countries. Then Canada was also really, you
know, a wake up call for me at the time.
But the normalization of just seeking help and not being
listened to was so entrenched in me at that point that I'd kind
of just like accepted this was my life and that I have to live
with it. So you think that if she'd have
had that diagnosis of heds and gone to the doctors with the
symptoms, you think things could have been different?
I think that it I think that having a diagnosis of heds or
HSDI think one of the things that it really does, which is
helpful is it helps people know that they're not imagining
things. I think that's the most
important thing. And when it comes to the book,
for example, like, something I haven't talked about much on
social media, but that's really important to me is that I will
always feel like my mom, maybe her today, if she was better
able to advocate for herself and she'd been better able to trust
how she felt in her body. Yes.
But because she had a lifetime of muscle and joint pain and gut
issues and different things that she, like, coped.
I don't even know how she coped with a lot of it, to be honest.
But she just somehow she pushed through it like many people do,
like many people listening and watching this podcast just do.
Yeah. What really upsets me is that,
like, she got to that critical health issue where she needed to
be able to listen to her body and to trust herself and, you
know, to really push for that second opinion or that medical
imaging study or whatever. And instead of being able to do
that, she did, you know, what I then went on to do in some
health situations myself, which is to say, look, the doctor says
it's fine. I've talked with them
repeatedly. It must be fine, like, and, and
she, I just believe that she would have felt so, like her
experience had been so validated, her life experience
by a diagnosis or even even if she couldn't access a diagnosis.
And again, many people can't, you know, the situation in the
UK we've talked about on other episodes, it's difficult to have
a diagnosis. Yeah.
Even if she couldn't, knowing at least that there was a plausible
rationale for her life, her symptoms.
Yeah. So I do think I wish I could,
you know, almost run a simulation and see what would
have happened if she was not told, Oh, it's because you're
anxious. It's because you're sensitive.
It's in your head, like if she'd been told, hey, you know, there
are reasons why this is happening.
So that's. Very sad too.
I'll never I'll never know, but that's my that is my personal
yeah. Passion.
Someone wanted a guess on the podcast.
She's like, why, how, why do you do this?
Like, how do you make this viable?
And I'm just like, that's a great question, but it's really
it's just it's. Burning.
Yeah, it's so important. Burning 100%, this is this is
critical and this type of health awareness and this type of
information about HDS and HSD, it does save lives.
And yeah, I will always feel that way.
It does I think you know, because I I started my TikTok
would and I am someone who has never even taken a selfie up
until that point. I wow hate it.
I hate it. You know yourself.
It's virtually impossible to get a picture of me I've.
Taken just. Dodge and it came partially from
a place of feeling that burning. And I don't want to say it's not
a rage, but it's a quiet rage and you have to turn into
something constructive otherwise it just eats you up.
So for me, I wanted to talk to other people and figure this out
as well. But it, it, it was something
therapeutic for me. And I think if, if I'd, if I
didn't even have the same family history that you've had with,
with your mum dying. So yeah.
And understand. No.
And. You have, you're entitled to
your own experience. I think too, there's always this
like comparison. I think we all do it because we
live with other people. But like, I remember my mom
would be dying and I would be having the horrific pain I had
my friend would stub her toe or something and like that sucks.
Like just things are all allowed to be lousy in different ways.
You know, I agree. I totally get that.
In terms of my personal experience.
I want to get into that more with you.
We will get into that more in your episode, I think.
Let's talk. Yeah, we'll touch on the PCOS
because my whole journey started actually with addressing my PCOS
and an argument I had with my doctor about how I didn't meet
the diagnostic criteria and I was too skinny, even though
weight appears nowhere on the diagnostic criteria.
But let's get into that more when I talk.
With you, I know and and we can talk about how I had the
opposite experience of, of my consultant saying, well, you
have a very PCOS figure and I said great, but yeah, it's
different, different, different, but the same.
Same but different. We'll get into that more.
But if we Fast forward like back up to the the book and so on, I
think for me, it's about like people being able to access a
guide. I just, yeah, I don't know, I I
do know how I got to where I am today.
And it's through a lot of trial and error, a lot of luck.
Yeah. And I would literally spend
Friday nights in my 20s just on pub Med, reading research papers
instead of being with my friends, which probably probably
explains most of my social issues today.
But that type of like, it's just that sheer, that sheer times
amount of time spent doing this kind of trial and error
approach. Yeah, that helped me a lot with
the muscle and joint pain. I was lucky again, because I'd
had some physiotherapy, you know, manual therapy in my
teens. It didn't do anything.
It actually made my symptoms worse.
The exercises I was given made my symptoms worse, and I was
blamed for doing them wrong as well, which really annoys me.
So I had a very negative experience there.
And it's only through luck that I was able to actually give
manual therapy and exercise a second chance.
But a lot of my 20s was just kind of spent doing this trial
and error, you know, kind of becoming, I think eventually I
became the healthcare provider I needed.
Yeah, yeah. And I think things would have
been a bit different if you had access to a book where it laid
it out a little bit more. Just absolutely.
Just a little explanation, a little map, a few answers to
questions I was dying to probably know the answer to.
Like, so. So to give you an idea of the
structure of the book, the first few chapters we talk about
diagnosis. We talk about relevant anatomy
and Physiology in a fun and accessible way.
Yeah. Because I hate boring.
You know that. Yeah.
And but I also love science. And I think that this is really,
this knowledge is important because it empowers patients to
ask questions. So when that patient is talking
with their physiotherapist or their osteopath or whatever,
talking with their medical doctor, they can say, you know,
OK, you're saying this, but what about this?
It gives them that voice that I wish more people had.
And I wish that I'd had, and I wish that my mom had.
But as well. The second-half of the book is
an FAQ so I can ask most random questions on social media.
He's. Just going to ask you, is that
why you wrote the book? Because you were getting random
questions. It's because I always give the
same answers and that's something.
I'm quite proud of. Is I take a very principles
based and science based approach, so I'm open if I get
something wrong, tell me there are some things where probably
haven't said things perfectly. If if people ever see Conan, you
can tag me in and I'll address it or whatever, right?
But for the most part, I've gone in things, in my opinion,
certainly right. And I haven't had to change my
position much because we're looking at Physiology and
anatomy and some of the small amount of research that's that's
done on this subject, which there isn't as much as there
should be. Yeah, but in the in the, sorry,
on social media, I get asked so many questions like what bra
should I wear? Like what type of exercise?
Everything. For hypermobility, yeah.
Yeah, every. Question.
Honestly home decor. Like we've talked about careers
in this field, I'm waiting for like a hypermobility interior
designer. I have thoughts on everything
from fashion to home decorating. It affects everything.
Yeah, Oh my gosh. Like a pan I buy for my kitchen
stove. Like I'm looking at the weight.
How do the handles feel like? Does it feel OK?
Is it the texture? It's your nightmare.
It's easy to clean because I'm tired, OK?
That's very true. So look, it's basically my brain
in a book and if you like my content you will love my book
and if you don't then please, you'll enjoy it.
No, I can tell that from the snippets that you've shown me.
I thought this is a very Alex book.
It's very much like, tell me what I need to know.
Oh, there's a nice little drawing that she's doing now.
Oh. Oh, there's a chart.
OK, back to the science. Yeah.
Useful. Information with fundamental
tangents in a cute little package.
But it was written in part in the town where Dracula is
supposed to have landed. So I think you took some
inspiration from that a little bit, just a little.
Bit it was, honestly. Of chaos.
There were dark times and yeah, the the whole field is chaotic,
quite frankly. Living with HDS or HSD, You
know, going back to that first question at the start of this
episode, what's it like? Yeah, what's it like?
Organized chaos. I best organized it where it's
not organized, but yeah, we deal with it.
No, I feel that. Any last question for today?
I would like to know how so you talked about your childhood was
difficult with pain and surgeries and fractured bones
and just gut and then you went to the dark times of the neck
and head pain and jaw, all that jazz.
How did you get from there to here?
Because you said that you do quite well.
You're at the CrossFit, the CrossFit.
So how's how have you gone from there to here?
Slowly and carefully, I would say.
So one thing that really helped me is that when I was going on
my journey, social media was not a big thing.
Yeah. So I had no money and social
media didn't exist. So I would go to a local gym by
myself and I would just try and find a movement that I could do.
Like I would be so happy when I'd find one random exercise
that I could do. Yeah.
And I would then do that exercise and then I'd find
another exercise. And it was just kind of this
like collecting these these almost these bread crumbs.
I was talking to the patient about this earlier this morning.
When people try to do like, here's the protocol.
You see that a lot. Yeah, and it doesn't work
because everyone's needs are different.
So I was finding what worked for me.
And by moving, I was building muscle mass.
I was improving my other bodily systems and my health in general
as much as I could. And because I didn't have
pressure, oh, you should exercise this many times per
week in this way. I just, I went when I felt like
it. I did not go when I couldn't,
you know. Yeah.
So it was just that little bit of consistent, consistently
putting in effort. It is effort, 100%.
Sorry about that. Yeah.
Putting in effort and giving it time.
For me it was like a A5 year journey.
It's a long experiment. Yeah, literally kind of
experiment, you know, myself and be safe, of course.
And ideally, if you can access a healthcare provider who can
support you in this area, that's fantastic.
It will help you have progress faster.
It will help you be safe. But if you're someone who's
dealing with this on your own, I think that certainly finding
exercises that make you feel safe.
I'm always asking myself, do I feel safe when I do this?
Does it feel good? Do I love it?
If not lapu bell, like the lapu bell guy on TikTok, he is my
hero. I love him.
We are putting so much stuff in lapu bell and exercises that
hurt you or that you do not love.
Yeah, Lapu Bell and that's so different from what a lot of us
have gone through with physios and gyms where it's the push
through culture. So it's interesting that you
take the opposite approach sometimes.
My first question when I give a patient exercise and they're not
sure about it, I'm like, have I not explained it clearly enough?
Is there something going on where the patient perhaps is not
doing it well? But I'm looking first at me.
I'm not blaming the patient and thinking, oh, they're weak, they
need to stop complaining and work harder.
I'm saying has there been a communication mismatch here in
some way? And sometimes despite everything
being perfect, I've explained it perfectly.
The patient is listened carefully, they're doing it as
correctly as possible. It's still not right.
Yeah. So we then there's a million
ways to move with one of the. I say good in a joking way, but
one of the kind of good things with HDS or HSD.
Is there a different things you can work on?
Yeah, I could focus more on makeup issues, more on my
strength issues, more on this, You know, and even when it comes
to CrossFit, I call it Alex Fit because like I don't do proper
CrossFit, so I just like. You're the problem child.
Exactly but. Don't worry about me, I'm going
to do it this way. I'm the weird one in the corner
just doing my own thing. So like finding an environment
where you can embrace your weird.
I think that is if we're going to close on something for today,
I think that is like a key thing is finding what works for you
and being unapologetic about it. Yeah, definitely.
I think that's where you need to have some knowledge of what's
going on to have the confidence to go now.
I'm going to do it this way. This way feels right to me.
Absolutely. And whether that is something
you develop over time, if you have the time or you go into
this field maybe, or if you hire a professional and they're able
to help you, that's, that helps a lot.
But yeah, it's becoming the the person, you know, becoming the
expert of you almost, and being able to help, you know, manage
things in an, in an active way, which is hard and tiring.
And reading scientific research is difficult and making
decisions is not easy. But none of this is easy.
On that mildly depressing note, we shall have to wrap up for
today. I know there might be more
questions. I think we should do this again
someday. I agree.
Maybe in New Zealand where you're moving, who knows?
I mean, if you're going to going to take a work trip anywhere and
you see that. We shall see. 1st on the list.
1st on the list. Hannah, thank you so much for
having me. Thank you that and me.
I can't wait to talk with you about some other things on your
episode. Take care.
Thank you again for joining us today and I will see you for the
rest of this episodes this season.
It's going to be a blast.