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I think that I'm having a 
diagnosis of he DS or HSD. 

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I think one of the things that 
it really does, which is 

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helpful, is it helps people know
that they're not imagining 

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00:00:10,800 --> 00:00:11,920
things. 
I think that's the most 

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00:00:11,920 --> 00:00:22,600
important thing. 
Hey, I'm hyper mobile and if 

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you're listening to this, I'm 
guessing you might be too. 

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00:00:25,520 --> 00:00:27,840
Hi, my name is Alex and I'm your
hyper mobile host. 

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And today we have on the 
fabulous Hannah Hannah, also 

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known as the Histamine Queen on 
TikTok. 

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00:00:34,680 --> 00:00:37,040
And I think I helped you come up
with that name you named. 

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Me. 
Thank you. 

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Hannah's here today to interview
me. 

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So we have a guest, but also I'm
the guest. 

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00:00:42,120 --> 00:00:46,680
So this is kind of like a meta 
episode and this is episode 1 of

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00:00:46,680 --> 00:00:49,480
the season and it's being filmed
a little bit later than the 

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other episodes for any of you 
listening. 

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00:00:51,480 --> 00:00:55,920
So we've kind of had the chance 
to go through now and see what's

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really coming up and what's 
really important and, and like 

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kind of the why about all this. 
But before I start to 

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micromanage everything. 
So I'm going to take my hands 

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off the wheel and let you go 
take it away. 

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I feel the weight of the 
responsibility. 

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So, Alex, I'm in charge today. 
OK. 

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So we're going to ask you a few 
questions and I've enlarged the 

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text. 
Yep. 

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Because my grandma ways I 
continue, I've got babyface and 

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grandma hands in true HEDS 
fashion. 

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That is the life. 
Did I ever tell you my mom was 

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the director of a retirement 
home for marketing department 

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purposes. 
And when I was age 12, I was 

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like going to bathrooms, looking
at grab bars, just like, wow, 

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this accessibility stuff is so 
nice. 

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So we we are all old on the 
inside, but young on the 

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outside. 
Definitely. 

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Yeah. 
Grandma at heart. 

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So, Alex, I'll mention I call 
you Alexandra. 

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I think Alex, because that's 
what I don't know, that's what 

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everyone calls me online, but. 
I've got some questions prepared

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from you today. 
They were collaborative, though 

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we did talk about. 
We did, we did, but I would like

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to know, why have you been so 
quiet on social media lately? 

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Oh, getting to the heart of the 
matter, this, The last year's 

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been rough, rough times to be 
entirely honest. 

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So to start off with, I got my 
heds diagnosis so I now 

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officially have high for mobile 
download syndrome. 

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And people always like, is that 
a good thing or a bad thing? 

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It's kind of just like a thing. 
Like, yeah. 

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It's just I've known for a long 
time. 

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Obviously with my work with 
patients, I knew that I met the 

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diagnostic criteria and there 
are some reasons that it kind of

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became time for me to really 
prioritize pursuing that. 

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As you know, in the UK you 
usually have to self fund these 

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things. 
Yeah. 

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So I was like I want to renovate
the kitchen but also like. 

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Not fall apart. 
I know I want to not fall apart.

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So over the last year, just a 
few things have made that more 

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of a priority. 
So going back to things like the

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last year, I've just been really
tired, in part because of the 

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realities of living with a 
condition like HEDS or HSD. 

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But also I decided to do things 
like write this book. 

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Yeah. 
So as you know, the book is my 

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passion project. 
It's called Help. 

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I'm Hyper Mobile, like the 
podcast your How to Guide for 

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00:03:12,920 --> 00:03:16,080
HEDSHSD and Life in a Hyper 
Mobile Body. 

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Yeah. 
And I had this idea that it 

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would be so simple to write a 
good nonfiction book because I 

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want this book to be like a 
survival guide almost. 

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I want it to be something that 
people can refer to that's 

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mildly entertaining, relatively 
useful, and that is properly 

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referenced so things are 
actually factual and that that 

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is not easy. 
So there is a, we're in the 

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final process now of copy 
editing and getting all of that 

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done, book formatting and so on.
I wanted the book out on January

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1st. 
That's not going to happen. 

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It's been pushed back to what's 
looking like a March. 

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Yeah, publication date, but 
yeah, that has been where I've 

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been hiding. 
And you very graciously let me 

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stay with you and Whitby and 
lock myself in your. 

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Attic. 
The attic. 

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That's where most artists do 
their best work is in the attic.

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And that the view of Whitby 
Abbey was very inspiring and and

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you saw me like you would come 
up and I'd be on the bed like 

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hunched over typing until my 
fingers like they would get cold

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and painful, to be honest. 
But nothing is going to going to

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stop this book from happening. 
So you know how you've you've 

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seen it first hand. 
Yeah, and I've seen, I've seen 

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you cross legged on my bed, 
which I was very impressed at. 

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00:04:30,000 --> 00:04:33,920
Yeah, I used to sit cross legged
until the knees gave up. 

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00:04:34,440 --> 00:04:37,560
Yeah, it's it's hard to find a 
position. 

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The truth is every position 
hurts you eventually. 

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00:04:39,720 --> 00:04:42,600
So I will you'll see me fidget. 
Like during these episodes, I 

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00:04:42,600 --> 00:04:45,400
literally swap how I'm sitting 
cross legged to try to not wear 

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out or overly stress one side or
the other. 

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My bad writing position or 
studying position was always 

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lying on my front. 
I would do it on my elbows, like

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writing or typing. 
I think that's what really 

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00:04:55,760 --> 00:04:58,400
irritated my neck growing up, 
especially being a student. 

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00:04:59,080 --> 00:05:00,760
But yeah, do you remember? 
I'd go to the library, to the 

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Whitby library and put my 
compression leggings on. 

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00:05:04,200 --> 00:05:06,000
Yeah. 
Because sitting with legs down, 

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that hurts as well. 
And I would just write there. 

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And you'd be like, when are you 
coming back? 

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00:05:10,040 --> 00:05:12,840
And I'm like 2 more hours. 
What would you like for dinner? 

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Basically, So that's one place 
I've been. 

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Last year I was also diagnosed 
with cervical intrapithelial 

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neoplasia, which sounds like it 
sounds really scary. 

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It does. 
If I did not work in the 

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healthcare field and I would 
have been freaking out more than

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00:05:27,880 --> 00:05:30,400
I did. 
But it basically meant that I 

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have or that I had precancerous 
cells in my cervix, which for 

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me, because of what happened to 
my mom, which we'll get to in a 

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little bit, is really upsetting.
I think, I can't remember if I 

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called you ugly crying, but I 
was like very upset by this. 

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Because when you go for your Pap
smear, they find you have 

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abnormal cells. 
You then need to go for an 

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assessment, a colposcopy and a 
biopsy. 

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So when you hear scope, that 
means camera. 

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So they take a little look at 
it, see what's going on, and 

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then the biopsy is they they 
take the tissue. 

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Yeah. 
And that was a whole stressful, 

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upsetting experience. 
Yeah, I'm all good now, so 

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00:06:06,720 --> 00:06:10,680
nobody needs to worry. 
But that that kind of did really

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take up my whole summer last 
year just in terms of the stress

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and anxiety that I felt. 
About. 

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Yeah, Well, I mean, as I say, 
we'll talk about, Yeah, your 

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mom's story later, but I can 
understand it. 

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It's. 
It scratches on a wound that's 

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very close to the surface. 
Even if it's not, you understand

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it's not the end of the world. 
Hopefully. 

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Yeah, it's end of the world 
right then. 

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It's it's this weird mix, like I
hate being a patient and I was, 

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I actually really nervous for 
today. 

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Yeah. 
I like to be in control, Yeah, I

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like to be the one in charge. 
It's really weird not not being 

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00:06:38,960 --> 00:06:42,280
in charge in situations. 
But yeah, it's like I was 

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looking at the research, you 
know, knowing that I'm not in 

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immediate, you know, barrel 
necessarily, but this gut 

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00:06:48,680 --> 00:06:51,600
visceral reaction you people get
sometimes to certain health 

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issues, it it gets to you. 
Like I was up to like 2:00 AM. 

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So it's just sobbing, you know, 
especially before the procedure.

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00:06:59,000 --> 00:07:02,360
Yeah, I do have to say as well, 
too, for anyone listening to 

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this, I obviously I am on 
TikTok, I'm on social media, and

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there are a lot of people 
talking about their experiences 

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00:07:07,960 --> 00:07:10,400
on there as they, you know, are 
absolutely entitled to. 

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00:07:10,400 --> 00:07:13,040
Yeah, I, I learned so much from 
just hearing from. 

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Yeah, from patients. 
Yeah. 

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00:07:14,520 --> 00:07:16,800
Like things about different, 
changing different ports and all

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types of medical things that 
people have to manage that I 

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would never know about. 
Like, I just learn through 

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seeing what people actually 
experience. 

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00:07:24,160 --> 00:07:28,760
But I have to say, some of the 
content, really, it did make me 

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00:07:28,760 --> 00:07:30,520
a bit more stressed because 
people were talking about how 

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00:07:30,520 --> 00:07:32,760
painful it is having the biopsy 
done. 

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00:07:33,120 --> 00:07:35,800
Yeah, I have to say for me, I 
don't know what's wrong with my 

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cervix. 
Maybe, maybe I don't have any 

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nerves in it. 
I don't know. 

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00:07:39,520 --> 00:07:42,480
It was OK. 
It was not like as bad as I 

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thought it was going to be. 
In terms of pain, given that 

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we're in the UK and they don't 
tend to do any pain management 

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00:07:48,080 --> 00:07:51,640
stuff. 
I had nothing if I was managing 

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the procedure myself if I could 
choose what to have. 

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Like I wish that they just given
me like a mild sedative the day 

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before or something. 
Yeah, they do it in different 

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countries. 
Yeah, because the anxiety was 

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00:08:02,000 --> 00:08:04,240
bad. 
The thought of the whole process

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00:08:04,240 --> 00:08:07,360
is like, terrifying. 
Oh, and I forgot to be medical 

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00:08:07,360 --> 00:08:09,160
disclaimer again. 
We'll put it in the text. 

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00:08:09,560 --> 00:08:12,040
This is not medical advice. 
I don't even know we're going to

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00:08:12,040 --> 00:08:13,920
talk about this episode, so I'm 
just going to put a disclaimer 

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00:08:13,920 --> 00:08:16,680
on everything. 
There might be swear words. 

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There might not be. 
We're just going to wait and 

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00:08:18,760 --> 00:08:19,840
see. 
But yeah, this is not medical 

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00:08:19,840 --> 00:08:21,840
advice. 
And listen. 

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If it's appropriate for you, 
listen. 

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As I always say, I am just some 
chump on the Internet. 

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00:08:26,840 --> 00:08:29,120
Yeah, I just, I just go on my 
merry way and go. 

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That looks interesting. 
That makes sense. 

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And then? 
Well, I call you. 

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You're an expert patient or 
knowledge. 

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00:08:35,240 --> 00:08:38,000
Yeah, you have some lived 
experience and we'll we'll be 

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00:08:38,000 --> 00:08:40,440
interviewing you for later in 
the season as well, which I'm so

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00:08:40,440 --> 00:08:42,919
excited about. 
But yeah, that that happened. 

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So that health issue happened, 
my gut issues. 

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So as you know, I manage my 
muscle and joint issues really 

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well given that it's my work 
luckily. 

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00:08:49,720 --> 00:08:53,840
But gastrointestinal issues for 
HDS are not fun chaos. 

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00:08:53,840 --> 00:08:56,160
I have not cracked the code, no,
no. 

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00:08:57,040 --> 00:08:59,040
So. 
But there is no code to crack 

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00:08:59,040 --> 00:09:00,400
apparently. 
There has to be a. 

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00:09:01,320 --> 00:09:07,080
There must be a code. 
I have not cracked that yet and 

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00:09:07,080 --> 00:09:09,680
that is something I get a bit 
embarrassed talking about it. 

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00:09:10,320 --> 00:09:12,640
I do actually talk. 
In one of the episodes the guest

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00:09:12,640 --> 00:09:17,040
I had on a patient we had pre 
episode talk and I was like do 

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00:09:17,040 --> 00:09:18,920
you want to talk about gastro 
shoes or not? 

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00:09:19,040 --> 00:09:20,880
How far do you want to go? 
We went far. 

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00:09:21,360 --> 00:09:24,000
We went far. 
We did talk about the time that 

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00:09:24,000 --> 00:09:26,760
I did not use the toilet for 
three weeks, which was like 

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00:09:26,760 --> 00:09:31,000
humiliating as a 15 year old and
confusing and like, it all makes

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00:09:31,000 --> 00:09:33,240
sense later. 
But yes, you can look. 

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00:09:33,320 --> 00:09:36,720
Well, yeah, and have really 
problematic things happening on 

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00:09:36,720 --> 00:09:37,680
the inside. 
Absolutely. 

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00:09:38,040 --> 00:09:45,200
Speaking of which, take it away.
All right, so Alexandra, how 

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00:09:45,200 --> 00:09:48,720
would you explain HEDS to 
somebody who hasn't got a clue? 

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00:09:48,720 --> 00:09:51,800
Because I had this question 
earlier when I went to visit my 

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00:09:51,800 --> 00:09:55,800
auntie and another of my 
relatives was recently diagnosed

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00:09:55,800 --> 00:10:00,440
with HEDS, which is cool because
I played a part in her diagnosis

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00:10:00,440 --> 00:10:07,080
hopefully. 
And so and my auntie said, well,

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00:10:07,080 --> 00:10:08,840
how do you diagnose someone with
HEDS? 

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00:10:08,840 --> 00:10:10,120
Like what? 
What's the deal? 

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00:10:10,160 --> 00:10:12,680
And. 
Well, there is a whole chapter 

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00:10:12,680 --> 00:10:16,480
in the book on this. 
And I said, where do you want me

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00:10:16,480 --> 00:10:18,400
to start? 
Absolutely. 

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00:10:18,640 --> 00:10:21,760
So you saw me, I'm going with 
the book, right? 

214
00:10:21,760 --> 00:10:24,800
You saw me happy some days and 
really sad and angry other days.

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00:10:24,920 --> 00:10:29,440
The diagnosis chapter was a 
stressful and frustrating 

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00:10:29,440 --> 00:10:33,040
chapter to write for sure. 
So for the full depth answer, 

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00:10:33,040 --> 00:10:35,720
read that when it comes out. 
But here's the short answer. 

218
00:10:36,120 --> 00:10:38,120
There's kind of two approaches 
you can take with this question,

219
00:10:38,120 --> 00:10:40,040
right? 
From a medical perspective, we 

220
00:10:40,040 --> 00:10:42,800
have a genetically inherited. 
So we know it's inherited, we 

221
00:10:42,800 --> 00:10:46,480
know it's autosomal dominant. 
So if a person who's affected 

222
00:10:46,480 --> 00:10:49,200
has a child with someone who's 
not affected, there's a 50% 

223
00:10:49,200 --> 00:10:52,360
chance that any child is going 
to present with heds or HSD. 

224
00:10:53,120 --> 00:10:55,520
We also know that it's a 
connective tissue disorder and 

225
00:10:55,520 --> 00:10:58,520
we know that connective tissue 
is in every system in the body, 

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00:10:58,520 --> 00:11:01,480
which is wild and partly why it 
gets so disorienting. 

227
00:11:01,920 --> 00:11:04,520
So we can see all these medical 
things, but I think it helps 

228
00:11:04,520 --> 00:11:09,400
sometimes to think of it more in
a, a different way in terms of 

229
00:11:09,400 --> 00:11:11,720
making it make sense to patients
or make sense to people where 

230
00:11:11,720 --> 00:11:14,280
we're not talking in a medical 
context, like your grandma or 

231
00:11:14,280 --> 00:11:16,080
your aunt or whatever, Like 
they're not a doctor, right. 

232
00:11:16,080 --> 00:11:20,920
So when I'm trying to explain it
to to family, I'll say things. 

233
00:11:20,920 --> 00:11:22,640
When I'm talking to patients who
are trying to start to 

234
00:11:22,640 --> 00:11:25,200
understand it, I'll say things 
like what I said in an early 

235
00:11:25,200 --> 00:11:27,400
video. 
So when my first viral TikTok 

236
00:11:27,400 --> 00:11:29,840
videos, I'm wearing a green 
T-shirt and I talk about my 

237
00:11:29,840 --> 00:11:31,960
shoulder being homeless. 
Yeah, I don't know if you ever 

238
00:11:32,000 --> 00:11:34,160
saw it. 
I don't know what I saw it, but 

239
00:11:34,800 --> 00:11:36,400
yeah, I've heard you say that a 
lot. 

240
00:11:36,440 --> 00:11:39,080
Yeah, it's like this feeling out
of place. 

241
00:11:39,080 --> 00:11:42,600
So if I'm trying to describe 
what it actually feels like to 

242
00:11:42,600 --> 00:11:50,920
someone, I would say that having
HEDSHEDS or HSD, it feels like 

243
00:11:51,000 --> 00:11:55,200
everything is kind of not quite 
where it should be all the time 

244
00:11:55,200 --> 00:11:57,560
or not quite working all the 
time, which is really difficult 

245
00:11:57,560 --> 00:12:00,480
because when you look in the 
mirror, you might look like. 

246
00:12:00,840 --> 00:12:02,440
You could even look. 
Great, right? 

247
00:12:02,440 --> 00:12:04,400
Or you might also not look great
and that's OK too. 

248
00:12:04,800 --> 00:12:07,880
But it's like it's the the 
outside sometimes does not match

249
00:12:07,880 --> 00:12:10,760
the inside with that invisible 
illness or invisible disability 

250
00:12:10,760 --> 00:12:14,240
component. 
Another analogy I like to use is

251
00:12:14,240 --> 00:12:16,160
I think of it like an old 
Victorian house. 

252
00:12:16,160 --> 00:12:19,000
So I didn't get this till I 
moved to the UKI lived here for 

253
00:12:19,000 --> 00:12:22,440
12 years now. 
But these old Victorian homes, 

254
00:12:22,680 --> 00:12:25,760
there's like when you if you buy
one and be careful if you do. 

255
00:12:26,840 --> 00:12:30,160
There is stuff, yeah. 
I live in it's predates. 

256
00:12:30,160 --> 00:12:34,120
Victor, it's so cute. 
But I feel it, it falls apart, 

257
00:12:34,120 --> 00:12:36,560
but it looks fantastic. 
Yeah, yeah, There it's it has 

258
00:12:36,560 --> 00:12:37,720
charm. 
It does we. 

259
00:12:38,080 --> 00:12:39,000
We have. 
Crooked. 

260
00:12:39,000 --> 00:12:40,800
Charm. 
What's the word from Better late

261
00:12:40,800 --> 00:12:42,560
than single? 
The phrase unexpected. 

262
00:12:42,680 --> 00:12:45,320
Unexpected charm. 
And the pillow is unexpected, 

263
00:12:45,800 --> 00:12:47,760
better late in single style 
pillow by the way. 

264
00:12:47,840 --> 00:12:51,360
But yeah, unexpected charm. 
So the person with HSD like 

265
00:12:51,400 --> 00:12:55,280
look, they can look a certain 
way, but on the inside sometimes

266
00:12:55,280 --> 00:12:56,720
things are not quite as they 
should be. 

267
00:12:56,720 --> 00:12:58,880
So going back to that house 
analogy, there's probably some 

268
00:12:58,880 --> 00:13:01,120
electrical issue and when you 
fix that, there's some plumbing 

269
00:13:01,120 --> 00:13:02,360
issue. 
And when you renovate the 

270
00:13:02,360 --> 00:13:04,240
kitchen, you need to go renovate
the bathroom. 

271
00:13:04,240 --> 00:13:08,160
So to use myself as an example, 
it's like I had to think of 

272
00:13:08,160 --> 00:13:12,760
dealing with PCOS early on, 
which again is, you know, I'm 

273
00:13:12,760 --> 00:13:15,680
not saying it's the same as HDS,
it's another condition I 

274
00:13:15,680 --> 00:13:17,720
believe, and I always mix this 
up. 

275
00:13:17,720 --> 00:13:20,160
I think it ends up being 
classified as a Co occurring 

276
00:13:20,160 --> 00:13:23,040
condition based on research, but
please check the book. 

277
00:13:23,040 --> 00:13:25,360
That's where everything is 
referenced and cited 

278
00:13:25,360 --> 00:13:28,560
appropriately. 
But it's like you'll deal with 

279
00:13:28,560 --> 00:13:29,960
one health issue and then you 
have another. 

280
00:13:29,960 --> 00:13:32,360
So maybe you have M glass or 
some issue like that and then 

281
00:13:32,360 --> 00:13:35,000
you'll deal with that and then 
another thing crops up. 

282
00:13:35,000 --> 00:13:38,480
So it's always this like kind of
firefighting that never. 

283
00:13:38,520 --> 00:13:42,240
Talk about it like the house is 
on fire but it's like 16 

284
00:13:42,240 --> 00:13:43,200
different rooms. 
Yep. 

285
00:13:43,560 --> 00:13:47,120
And if you try and fix every 
room at once, you have no place 

286
00:13:47,120 --> 00:13:49,240
to live. 
So I talk to patients like when 

287
00:13:49,240 --> 00:13:51,400
they're like, Alex, should I see
the cardiologist, 

288
00:13:51,400 --> 00:13:53,920
gastroenterologist, you know, 
respirologist, whatever. 

289
00:13:53,920 --> 00:13:55,840
I'm like, you can. 
Yeah. 

290
00:13:55,840 --> 00:14:00,720
But we kind it might be better 
to take it one step at a time if

291
00:14:00,720 --> 00:14:03,680
we're trying to manage this in a
slow and sustainable way and 

292
00:14:03,680 --> 00:14:05,320
also figure out what helps and 
what doesn't. 

293
00:14:05,320 --> 00:14:08,440
Because people will try and do 
everything and we don't really 

294
00:14:08,440 --> 00:14:10,800
know then what's actually made a
difference to their symptoms and

295
00:14:10,800 --> 00:14:13,200
what hasn't. 
It's the strategy of it all is, 

296
00:14:13,200 --> 00:14:19,120
is it's incredibly daunting. 
So then you kind of scale back 

297
00:14:19,120 --> 00:14:21,640
and you go back to basics. 
Then you realise, well, I can't 

298
00:14:21,640 --> 00:14:24,600
put one room out because the 
other 16 are raging. 

299
00:14:25,120 --> 00:14:27,920
But then you've got to kind of 
dampen down them all a little 

300
00:14:27,920 --> 00:14:29,640
bit so they don't spread to the 
next room. 

301
00:14:30,080 --> 00:14:33,280
And it's the, the strategy, I 
think is, is missing a lot that 

302
00:14:33,280 --> 00:14:35,960
I've as a patient, I've 
struggled with because you go to

303
00:14:35,960 --> 00:14:39,280
1 specialist and they say one 
thing and they go right, this 10

304
00:14:39,280 --> 00:14:40,440
out of 10, what you've got to 
do. 

305
00:14:40,440 --> 00:14:42,320
So you do that, then that 
affects that thing. 

306
00:14:42,320 --> 00:14:43,760
And then we're not addressing 
that thing. 

307
00:14:44,080 --> 00:14:45,520
And then, well, that undermines 
that. 

308
00:14:45,520 --> 00:14:49,600
And it's just like. 
And This is why we need medical 

309
00:14:49,600 --> 00:14:52,200
doctors who will help with more 
of the coordination of care 

310
00:14:52,200 --> 00:14:54,640
management because patients ask 
me this and again, I will give 

311
00:14:54,640 --> 00:14:57,200
answers within the scope of my 
professional expertise. 

312
00:14:57,600 --> 00:14:59,400
So for anyone who doesn't know 
this yet, I'm not. 

313
00:14:59,400 --> 00:15:01,400
I'm still not a medical doctor, 
believe it or not. 

314
00:15:02,840 --> 00:15:04,680
When will you take one for the 
tea? 

315
00:15:04,840 --> 00:15:07,120
You know, I bet like people tell
me like don't like. 

316
00:15:07,160 --> 00:15:08,440
I have a nice job. 
I think you. 

317
00:15:08,520 --> 00:15:09,680
I get to mind. 
I get to sleep. 

318
00:15:09,680 --> 00:15:10,920
Yeah. 
Like, I don't have to, you know,

319
00:15:10,920 --> 00:15:12,480
I don't deal with certain bodily
fluids. 

320
00:15:12,480 --> 00:15:16,920
I love my work, OK? 
It's like we need people who 

321
00:15:16,920 --> 00:15:19,360
look at patients and help them 
kind of coordinate care and 

322
00:15:19,560 --> 00:15:22,640
triage because patients, even 
from a musculoskeletal 

323
00:15:22,640 --> 00:15:24,480
perspective, they'll come to me 
and say, Alex, my shoulder 

324
00:15:24,480 --> 00:15:26,040
hurts, my knee hurts, my hip 
hurts, my neck hurts. 

325
00:15:26,040 --> 00:15:28,680
Where do I start? 
And it is within my scope to 

326
00:15:28,680 --> 00:15:31,800
say, OK, let's focus on this or 
let's get some medical imaging 

327
00:15:31,800 --> 00:15:34,440
to kind of figure out what we 
need to prioritize and how. 

328
00:15:34,840 --> 00:15:36,640
So I'm going back to what you 
said about strategy. 

329
00:15:36,640 --> 00:15:37,840
It's paramount. 
Yeah. 

330
00:15:37,840 --> 00:15:40,720
And I don't, I honestly, some I 
thought that I do have often is 

331
00:15:40,720 --> 00:15:43,400
like, I don't know how people 
cope when this is not their job 

332
00:15:43,400 --> 00:15:45,600
or their obsession. 
I don't know if you can say 

333
00:15:45,600 --> 00:15:49,360
about me, but it's like I think 
about this benevolent obsession.

334
00:15:49,360 --> 00:15:52,240
Yes, it is. 
Dave is like, Alex, please no 

335
00:15:52,240 --> 00:15:53,640
work talk. 
Like when we have dates, there's

336
00:15:53,640 --> 00:15:57,040
a rule I last like 2 minutes 
before it gets broken. 

337
00:15:57,880 --> 00:15:59,960
But yeah, it's like, I don't 
know how people cope when they 

338
00:15:59,960 --> 00:16:03,560
don't know anatomy, Physiology 
and they haven't studied this in

339
00:16:03,560 --> 00:16:06,160
detail. 
It must be It's like living in a

340
00:16:06,160 --> 00:16:08,560
home and everything's breaking 
and you don't know what to do 

341
00:16:08,640 --> 00:16:11,920
and the addict's haunted and. 
Then the instructions are in 

342
00:16:11,920 --> 00:16:13,360
like Chinese. 
Exactly. 

343
00:16:13,360 --> 00:16:14,600
And I don't speak Chinese. 
Yeah. 

344
00:16:14,800 --> 00:16:16,280
You're just like. 
I've got no hope. 

345
00:16:16,480 --> 00:16:19,520
Yeah, 100%. 
But yeah, that's how I describe 

346
00:16:19,520 --> 00:16:22,200
HESHSD. 
It's like it's just, it's a 

347
00:16:22,200 --> 00:16:25,640
genetically inherent connective 
tissue disorder where we have a 

348
00:16:25,640 --> 00:16:28,480
lot of different things happen 
all at once. 

349
00:16:28,480 --> 00:16:32,720
Yeah, people can be affected in 
a variety of ways, and the hard 

350
00:16:32,720 --> 00:16:34,280
thing is it's same but 
different. 

351
00:16:34,320 --> 00:16:36,360
You know, right now there's a 
lot of heterogeneity. 

352
00:16:36,360 --> 00:16:40,360
If we look at people with HDS or
HSD, some will be more affected,

353
00:16:40,360 --> 00:16:43,240
less affected, differently 
affected, or they'll be okay, 

354
00:16:43,240 --> 00:16:45,040
but something will happen and 
then they'll be less okay. 

355
00:16:45,040 --> 00:16:49,360
There's a lot of moving kind of 
parts and that's why we see 

356
00:16:49,360 --> 00:16:53,680
people, you know, like me who 
can go do all the gym or sporty 

357
00:16:53,680 --> 00:16:57,320
things that I I do and work like
more than full time hours quite 

358
00:16:57,320 --> 00:16:59,400
frankly. 
And we will see other people who

359
00:16:59,400 --> 00:17:01,760
also cannot work and who cannot 
go to the gym. 

360
00:17:01,760 --> 00:17:03,240
So that's why we see the 
spectrum. 

361
00:17:03,440 --> 00:17:06,000
But I mean, even within your own
story, you weren't able to 

362
00:17:06,000 --> 00:17:07,400
perform at that level. 
Oh no. 

363
00:17:07,400 --> 00:17:08,760
Entire life. 
Oh, there was a dark. 

364
00:17:08,760 --> 00:17:09,920
Time. 
Yeah, exactly. 

365
00:17:09,920 --> 00:17:12,800
It fluctuates from person to 
person, but within the person 

366
00:17:12,800 --> 00:17:14,520
too. 
The UPS and the downs. 

367
00:17:14,599 --> 00:17:16,880
I call it riding the UPS and 
riding the downs. 

368
00:17:16,880 --> 00:17:19,960
And when you you have an up, I 
think it's critical that 

369
00:17:19,960 --> 00:17:23,960
patients are supported in making
as much progress as they can. 

370
00:17:24,560 --> 00:17:27,000
So when I have a patient who 
they're feeling OK, they're 

371
00:17:27,000 --> 00:17:29,240
ready to go. 
I'm just like, let's try. 

372
00:17:29,240 --> 00:17:32,560
I'm like, let's go and be make 
sure to not make mistakes. 

373
00:17:32,560 --> 00:17:35,200
Let's make sure we get progress,
but let's take advantage of this

374
00:17:35,480 --> 00:17:38,880
energy that you have or this 
time or this kind of improved 

375
00:17:38,880 --> 00:17:41,080
management of symptoms. 
Let's let's make hay while the 

376
00:17:41,080 --> 00:17:45,280
sun shines, knowing that there 
will be at some point a down 

377
00:17:45,320 --> 00:17:49,320
again one day. 
I think I told you when this 

378
00:17:49,320 --> 00:17:51,640
happened. 
So fiber has been a very 

379
00:17:51,640 --> 00:17:53,040
difficult thing. 
Again, I don't know what the 

380
00:17:53,040 --> 00:17:54,280
answer is on fiber. 
You don't ask me. 

381
00:17:54,280 --> 00:17:56,080
We need a nutritionist on here 
or something. 

382
00:17:56,080 --> 00:17:59,000
But I took fiber for a few 
years. 

383
00:17:59,000 --> 00:18:00,720
It helped. 
Then something bad happened. 

384
00:18:00,720 --> 00:18:03,360
I stopped taking it. 
Gone into the Fodmaps thing, low

385
00:18:03,360 --> 00:18:06,840
fiber, blah, blah, blah. 
Got back on the fiber on the 

386
00:18:06,840 --> 00:18:09,200
psyllium husks in my case and 
then now. 

387
00:18:09,360 --> 00:18:10,560
Well, cursed. 
Wait a bit. 

388
00:18:10,600 --> 00:18:12,240
I know, but we're all, we're all
different. 

389
00:18:12,280 --> 00:18:15,560
We're all different and two 
cilium 2 cilium Musk fibers was 

390
00:18:15,560 --> 00:18:18,360
working great, but then it was 
like if 2 is good, three could 

391
00:18:18,360 --> 00:18:23,200
be better. 
No, yeah, 3/3 was worse. 

392
00:18:23,200 --> 00:18:26,000
Okay, so it's like, and again, 
you would think that's just a 

393
00:18:26,000 --> 00:18:27,760
small thing. 
Oh, I took one too many. 

394
00:18:27,800 --> 00:18:30,680
You know, cilium Musk capsules. 
I was wrecked. 

395
00:18:30,680 --> 00:18:32,680
I almost had to cancel clinic 
that day. 

396
00:18:32,680 --> 00:18:36,120
I was like out of it for a week.
So it's like these little things

397
00:18:36,120 --> 00:18:39,400
can have big consequences. 
Imbalances are so much more 

398
00:18:39,400 --> 00:18:40,760
it's. 
Like a knife edge. 

399
00:18:41,040 --> 00:18:42,440
I did. 
You came, I think you came to 

400
00:18:42,440 --> 00:18:45,560
the workshop this summer and I 
had this graphic of someone like

401
00:18:45,560 --> 00:18:48,880
walking a tightrope and then 
alligators in like a Canyon 

402
00:18:48,880 --> 00:18:50,280
below. 
It was a very artistic. 

403
00:18:50,280 --> 00:18:52,240
I was gonna I was impressed with
the artistry. 

404
00:18:52,320 --> 00:18:53,920
Thank you. 
I'm I'm good on Canva. 

405
00:18:54,120 --> 00:18:57,760
But that's what it feels like 
you when you have HDS or HSD. 

406
00:18:57,760 --> 00:19:02,240
You're walking this tightrope 
and it's so narrow, and even 

407
00:19:02,240 --> 00:19:06,480
though yes, you can walk fine 
when you're on it, one small 

408
00:19:06,480 --> 00:19:09,800
step the wrong way and the 
consequences are way worse for 

409
00:19:09,800 --> 00:19:12,840
you than someone who doesn't 
have this condition or something

410
00:19:12,840 --> 00:19:14,840
similar. 
I definitely cosign that it's 

411
00:19:15,520 --> 00:19:19,240
difficult to explain sometimes 
when you say yes, but you I 

412
00:19:19,240 --> 00:19:21,560
always say about I'm always 
calculating everything. 

413
00:19:21,920 --> 00:19:25,320
Well, if I take 1 cillium husk 
too much, that's Thursday Friday

414
00:19:25,320 --> 00:19:26,680
are out because disaster 
happens. 

415
00:19:26,680 --> 00:19:29,040
Yep. 
So better you only eat this and 

416
00:19:29,080 --> 00:19:31,760
then because for somebody else 
who doesn't have the same issues

417
00:19:31,760 --> 00:19:34,680
that that I have, what cillium 
husk is not going to be an 

418
00:19:34,680 --> 00:19:36,000
issue. 
Yeah, they'll be fine. 

419
00:19:36,000 --> 00:19:37,640
They'll just they've taken 1 
capsule too many. 

420
00:19:37,640 --> 00:19:41,400
That shouldn't be like a huge 
like my week is ruined thing to 

421
00:19:41,400 --> 00:19:42,240
do. 
Exactly. 

422
00:19:42,400 --> 00:19:44,800
Yeah, exactly. 
It's, it's, it's the the my week

423
00:19:44,800 --> 00:19:47,440
is ruined type of aspect that 
is, is difficult. 

424
00:19:47,600 --> 00:19:52,680
Yeah. 
But yeah, I I think it's it's 

425
00:19:52,680 --> 00:19:57,640
useful to get some knowledge 
around how HHEDS works because 

426
00:19:57,640 --> 00:20:01,360
my childhood make more sense. 
Even though I wasn't 

427
00:20:01,360 --> 00:20:04,480
particularly affected, it does 
help to know. 

428
00:20:05,040 --> 00:20:07,640
Kind of more of the picture what
what was yours like? 

429
00:20:07,640 --> 00:20:10,560
Did you have issues? 
Yeah, so for me, I had growing 

430
00:20:10,560 --> 00:20:13,280
pains. 
My earliest memory is crying, 

431
00:20:13,280 --> 00:20:16,440
like sobbing because my knees 
would ache and then ache and 

432
00:20:16,440 --> 00:20:17,760
ache. 
And I wish my mom was alive and 

433
00:20:17,760 --> 00:20:19,600
I could have her on so we could 
talk about this. 

434
00:20:19,600 --> 00:20:21,440
But like, they would ache 
terribly. 

435
00:20:21,440 --> 00:20:24,680
The pain was agonizing. 
Like, if I was teleported back 

436
00:20:24,680 --> 00:20:27,120
to wake up in Alex's child body,
I'd be like, shoot, I don't want

437
00:20:27,120 --> 00:20:29,840
to go to sleep tonight. 
Do I be fear of the pain? 

438
00:20:29,840 --> 00:20:32,840
Yeah. 
And she would tickle them and 

439
00:20:32,840 --> 00:20:35,200
joke about amputating them not 
to be, like, bad. 

440
00:20:35,200 --> 00:20:36,920
I mean, because, you know, 
children, they have weird sense 

441
00:20:36,920 --> 00:20:39,040
of humor. 
And I thought it was hilarious 

442
00:20:39,040 --> 00:20:40,320
that my mom was, like, tickling 
my knees. 

443
00:20:40,320 --> 00:20:42,400
Like, I'm gonna. 
We can take them off if they're 

444
00:20:42,400 --> 00:20:45,800
causing problems. 
But for me, you know, as an 

445
00:20:45,920 --> 00:20:49,040
adult, thinking back about my 
earliest memories being pain, 

446
00:20:49,120 --> 00:20:52,200
that's kind of like dark. 
Yeah, it is. 

447
00:20:52,760 --> 00:20:54,360
Yeah. 
That is my earliest memory. 

448
00:20:54,360 --> 00:20:56,520
Should be something, you know, 
happier, nice. 

449
00:20:56,520 --> 00:21:00,640
It shouldn't be pain. 
And I think that does affect you

450
00:21:00,640 --> 00:21:02,800
throughout your life in 
different ways, certainly. 

451
00:21:03,440 --> 00:21:07,240
So lots of pain. 
I had other issues. 

452
00:21:07,240 --> 00:21:10,800
So I actually like, I don't know
about the details on this. 

453
00:21:10,800 --> 00:21:14,840
Again, my mom's not here, but 
basically my airway was quite 

454
00:21:14,840 --> 00:21:17,160
occluded when I was sleeping. 
So my tonsils were so big, I had

455
00:21:17,160 --> 00:21:19,120
to have an emergency 
tonsillectomy. 

456
00:21:19,520 --> 00:21:22,600
And again, I know that tonsil 
removal, like, sometimes people 

457
00:21:22,600 --> 00:21:25,800
think it's overdone or whatever,
But in my case, it was bad 

458
00:21:25,800 --> 00:21:27,320
enough. 
Like, I, my mom would notice I'd

459
00:21:27,320 --> 00:21:30,320
stop breathing at night. 
So I had to go in immediately. 

460
00:21:30,320 --> 00:21:31,640
And we do see these airway 
issues. 

461
00:21:31,640 --> 00:21:33,840
We'll talk about it more 
probably in your episode. 

462
00:21:34,360 --> 00:21:37,480
But there was something not 
right with my airway. 

463
00:21:37,520 --> 00:21:40,600
Yeah. 
I then grew up and I was just 

464
00:21:40,600 --> 00:21:42,360
trying to be a normal kid. 
But when you look at photos, I'm

465
00:21:42,360 --> 00:21:44,840
covered in bruises. 
Like, I don't know how people 

466
00:21:44,840 --> 00:21:46,720
were not, you know, concerned 
myself. 

467
00:21:47,480 --> 00:21:50,160
But I know why because my mom 
also grew up covered in bruises,

468
00:21:50,160 --> 00:21:52,600
and my grandma, because it's a 
genetic condition. 

469
00:21:52,600 --> 00:21:54,280
Yeah. 
But yeah, I was covered in 

470
00:21:54,280 --> 00:21:57,960
bruises. 
And I would really struggle with

471
00:21:57,960 --> 00:22:01,120
a lot of gut issues as well. 
So my tummy would hurt. 

472
00:22:01,400 --> 00:22:04,000
And I was one of those children 
diagnosed with IBS and 

473
00:22:04,000 --> 00:22:06,680
gastroesophageal reflux disease 
age, like, 10. 

474
00:22:06,760 --> 00:22:09,080
Yeah, that's not right. 
Like, kids who are getting 

475
00:22:09,080 --> 00:22:11,920
diagnosed with these things, 
they need to be suspicious. 

476
00:22:11,920 --> 00:22:13,240
I never saw a 
gastroenterologist. 

477
00:22:13,240 --> 00:22:16,640
I never saw anyone. 
And it's just, it is staggering 

478
00:22:16,640 --> 00:22:19,280
that you didn't see a specialist
at that age to be developing 

479
00:22:19,280 --> 00:22:20,520
that type of thing. 
Yep. 

480
00:22:20,560 --> 00:22:21,920
And it gets worse. 
Yeah. 

481
00:22:21,920 --> 00:22:24,360
So I've also fractured like 5 
bones. 

482
00:22:24,360 --> 00:22:26,480
It was an 11 month span in 
September. 

483
00:22:26,480 --> 00:22:29,240
I fell, Sorry. 
I took a step. 

484
00:22:29,240 --> 00:22:30,920
I literally just stepped behind 
me playing football. 

485
00:22:30,920 --> 00:22:32,720
I just took a step. 
That was all I did. 

486
00:22:32,920 --> 00:22:37,400
So a non traumatic onset and I 
fractured my growth plate in my 

487
00:22:37,400 --> 00:22:41,640
right ankle and my fibula. 
I then and that made that bone 

488
00:22:41,640 --> 00:22:43,480
not grow as long, which will be 
relevant in a minute. 

489
00:22:44,120 --> 00:22:48,120
I then fractured my growth plate
in my wrist and a little I 

490
00:22:48,120 --> 00:22:51,000
chipped a piece off another bone
and that happened in February. 

491
00:22:51,000 --> 00:22:54,480
So three months apart. 
I was having two pretty serious 

492
00:22:54,560 --> 00:22:56,800
fractures. 
My right arm also didn't grow as

493
00:22:56,800 --> 00:22:58,560
long. 
So when I hang off bars, we're 

494
00:22:58,560 --> 00:23:02,120
always trying to find ways to 
kind of adjust with shoulders. 

495
00:23:02,120 --> 00:23:05,280
It's easier because of the joint
to compensate versus legs where 

496
00:23:05,280 --> 00:23:06,640
it's harder if you have a short 
leg. 

497
00:23:07,440 --> 00:23:10,760
And then I also chipped, I 
sorry, I fractured my a bone on 

498
00:23:10,760 --> 00:23:14,040
the outside of my foot again, 
but I had, I fractured 5 bones 

499
00:23:14,040 --> 00:23:16,960
in a nine month span. 
Why was I not referred to 

500
00:23:17,160 --> 00:23:20,520
someone for a potential bone 
density issue or something going

501
00:23:20,520 --> 00:23:21,320
on? 
Yeah. 

502
00:23:22,080 --> 00:23:26,720
So again, no medical care there.
And then we get to the like kind

503
00:23:26,720 --> 00:23:30,200
of teens to wrap this up. 
I had I had that episode where I

504
00:23:30,200 --> 00:23:34,440
did not, I could not use the 
toilet for three weeks and to 

505
00:23:34,440 --> 00:23:37,680
not be referred for any care 
then and do not even know how 

506
00:23:37,680 --> 00:23:40,520
serious that was. 
I know I was just like, yeah, 

507
00:23:40,520 --> 00:23:43,120
1415 living my best life. 
It was summer. 

508
00:23:43,320 --> 00:23:45,240
I was talking, I remember 
talking with my close friends 

509
00:23:45,240 --> 00:23:48,440
being like, what's the longest, 
like you, you know, trying like 

510
00:23:48,520 --> 00:23:51,160
my friend Aaron, I'm like, 
what's the longest time you've 

511
00:23:51,160 --> 00:23:53,360
ever not used the toilet for, 
you know, trying to do some 

512
00:23:53,360 --> 00:23:55,080
child research. 
Basically. 

513
00:23:56,920 --> 00:23:59,320
I like the Internet. 
We had like Ask Jeeves or 

514
00:23:59,320 --> 00:24:01,440
something. 
We didn't have ChatGPT. 

515
00:24:01,680 --> 00:24:03,520
I was just trying to survive. 
I know. 

516
00:24:03,800 --> 00:24:07,080
But then to not be referred for 
any care again was quite bad. 

517
00:24:07,200 --> 00:24:14,240
And I had my jaw surgery. 
So my jaw was born in a way that

518
00:24:14,240 --> 00:24:16,200
was really problematic in terms 
of function. 

519
00:24:16,520 --> 00:24:19,480
I couldn't eat a sandwich. 
I couldn't eat an apple. 

520
00:24:19,480 --> 00:24:22,520
I would use my front teeth to 
hook chunks of the apple out 

521
00:24:22,520 --> 00:24:25,240
like this and then go like a 
Little Beaver almost. 

522
00:24:25,920 --> 00:24:27,600
For those of you listening, you 
can watch the video and see a 

523
00:24:27,600 --> 00:24:30,000
nice reaction. 
But yeah, I would be, like, 

524
00:24:30,040 --> 00:24:33,000
hooking pieces of apple out 
because I couldn't bite. 

525
00:24:33,120 --> 00:24:35,200
Yeah. 
And my whole life I just wanted 

526
00:24:35,200 --> 00:24:37,400
to like, eat a sandwich and not 
have the filling fall out 

527
00:24:37,400 --> 00:24:38,440
because it's really depressing 
you. 

528
00:24:39,080 --> 00:24:40,920
Can't do it. 
It's not ideal, yeah. 

529
00:24:41,080 --> 00:24:43,840
They had jaw pain and so on. 
And when I go to the dentist, 

530
00:24:43,840 --> 00:24:45,640
they'd always use the child size
retainer. 

531
00:24:45,640 --> 00:24:48,000
And they're like, oh, it's so 
weird that you're like, you 

532
00:24:48,000 --> 00:24:49,960
know, you're getting older, but 
we still have to use the child 

533
00:24:49,960 --> 00:24:51,960
size retainer. 
Yeah, because I have a narrow 

534
00:24:51,960 --> 00:24:54,360
high palette, which look at the 
HDS criteria. 

535
00:24:54,360 --> 00:24:57,280
It's there. 
Anyways, so I had all these 

536
00:24:57,280 --> 00:24:59,400
things happen. 
I had what some people will call

537
00:24:59,400 --> 00:25:01,880
a double jaw surgery. 
That's kind of the common phrase

538
00:25:01,880 --> 00:25:05,720
you see online where they broke 
my lower jaw, moved it forward, 

539
00:25:05,720 --> 00:25:08,080
cut through my entire upper jaw,
moved it up. 

540
00:25:08,160 --> 00:25:09,960
Scary. 
I did not realize how major that

541
00:25:09,960 --> 00:25:12,120
was at the time. 
Just as well I I sometimes I 

542
00:25:12,120 --> 00:25:14,760
think of the I'm glad I didn't 
know something I know. 

543
00:25:15,040 --> 00:25:20,320
This is I'm so pro informed 
consent, but also if I had give 

544
00:25:20,360 --> 00:25:23,040
and also they had to get my 
wisdom teeth are going sideways.

545
00:25:23,040 --> 00:25:25,120
They had to like I think they 
used to chisel, but like, yeah, 

546
00:25:25,400 --> 00:25:27,760
that was like a six hour 
operation Major. 

547
00:25:27,760 --> 00:25:31,160
I'm happy I had it and I would 
do it again. 

548
00:25:31,160 --> 00:25:33,360
And I'm going to explain why I 
hesitate to say that a little 

549
00:25:33,360 --> 00:25:37,160
bit, but if I'd actually give an
informed consent, I don't know 

550
00:25:37,160 --> 00:25:39,640
if I could have done it. 
So it's like I think I still 

551
00:25:39,640 --> 00:25:41,080
would have done it, but it's 
it's not easy. 

552
00:25:41,080 --> 00:25:44,200
It's not none of this is easy. 
And again, I'm not saying that 

553
00:25:44,200 --> 00:25:48,560
necessarily, you know, the 
procedure I had or the specific 

554
00:25:48,560 --> 00:25:51,880
jaw presentation I had is linked
to HEDSI don't know if there's 

555
00:25:51,880 --> 00:25:54,760
clear research on that yet, but 
we do know that having a high, 

556
00:25:54,760 --> 00:25:58,560
narrow, yeah, certainly is 
linked to HEEDS as per the 

557
00:25:58,560 --> 00:26:00,480
current diagnostic criteria at 
least. 

558
00:26:01,840 --> 00:26:05,080
So I had that jaw surgery. 
And again, that's fine. 

559
00:26:05,080 --> 00:26:09,120
Like that was managed, but five 
years after that I had an 

560
00:26:09,120 --> 00:26:10,720
infection in my bone. 
Yeah. 

561
00:26:10,720 --> 00:26:12,280
And it's very rare that this 
happens. 

562
00:26:12,280 --> 00:26:16,440
It's like something like one in 
2 million, but a little some. 

563
00:26:16,760 --> 00:26:19,200
Basically at the time of the 
operation, probably a tiny bit 

564
00:26:19,200 --> 00:26:21,440
of bacteria got under one of the
screws or something. 

565
00:26:21,440 --> 00:26:23,640
Again, I'm not an expert here. 
This is my understanding. 

566
00:26:23,640 --> 00:26:26,240
OK. 
And overtime, that infection was

567
00:26:26,240 --> 00:26:28,880
kind of developing, but my body 
encapsulated it. 

568
00:26:28,880 --> 00:26:32,360
So it was kind of contained. 
But five years later, my body's 

569
00:26:32,360 --> 00:26:34,560
ability to cope with that, we 
have stopped. 

570
00:26:34,880 --> 00:26:38,040
And I developed pain. 
And I remember I was up all 

571
00:26:38,040 --> 00:26:40,920
night. 
I was like 20 at the time, and 

572
00:26:40,920 --> 00:26:43,640
it just wouldn't stop hurting. 
And it got worse and worse and 

573
00:26:43,640 --> 00:26:46,480
worse, and it was profoundly 
tender. 

574
00:26:46,520 --> 00:26:49,120
And I was taken to the dentist. 
He said, Alex, you're always 

575
00:26:49,120 --> 00:26:50,720
anxious. 
It's from grinding your teeth, 

576
00:26:50,720 --> 00:26:52,480
you know, this type of 
dismissive thing. 

577
00:26:53,480 --> 00:26:56,320
I then deteriorated. 
I had a fever of 40°. 

578
00:26:56,320 --> 00:26:58,640
I was being sick, like every 
half. 

579
00:26:58,680 --> 00:27:02,200
Hour in dress, isn't it? 
Yeah, you don't realize how 

580
00:27:02,200 --> 00:27:04,320
dangerous it is until you gain 
someone standing late to you. 

581
00:27:04,320 --> 00:27:07,000
Like I was so close. 
I didn't realize two years after

582
00:27:07,000 --> 00:27:10,800
that, so it gets worse because 
I'm my mom takes me to A&E. 

583
00:27:11,000 --> 00:27:13,480
She has triple negative breast 
cancer at the time. 

584
00:27:13,480 --> 00:27:16,600
Her cancer is terminal. 
She's not well and they 

585
00:27:16,600 --> 00:27:18,960
essentially tell me I'm a drug 
seeker and to go away. 

586
00:27:19,000 --> 00:27:21,440
I cannot get over this 
genuinely. 

587
00:27:21,440 --> 00:27:24,600
I know I am. 
I wish I had gone in my medical 

588
00:27:24,600 --> 00:27:26,400
files at the time I didn't and 
they destroy them. 

589
00:27:26,400 --> 00:27:28,000
I think after seven years in 
Canada. 

590
00:27:28,000 --> 00:27:30,360
So I don't even think I could 
access these anymore. 

591
00:27:30,360 --> 00:27:34,480
But it's shocking that I'm there
as a 20 year old being like, hi,

592
00:27:34,480 --> 00:27:37,160
I had jaw surgery like four or 
five years ago. 

593
00:27:37,160 --> 00:27:39,320
I have metal in my jaw. 
Could this be related? 

594
00:27:40,240 --> 00:27:41,280
It's it's bizarre. 
Yeah. 

595
00:27:41,520 --> 00:27:43,160
And I couldn't walk. 
I couldn't. 

596
00:27:43,280 --> 00:27:45,880
Like I was literally having 
febrile convulsions. 

597
00:27:45,880 --> 00:27:49,880
And it was only years later when
I did my osteopathy degree and 

598
00:27:49,880 --> 00:27:53,200
learned about bone infections 
and how close my brain is to 

599
00:27:53,200 --> 00:27:55,440
this. 
And I was like, oh, shoot, that 

600
00:27:55,440 --> 00:27:58,360
could have gone really badly. 
So I am someone. 

601
00:27:58,360 --> 00:28:00,520
And again, we don't know if 
there's an increased rate of 

602
00:28:00,520 --> 00:28:03,360
this type of with post operative
infection and some with HEDSI 

603
00:28:03,360 --> 00:28:05,360
don't want people coming away 
from this thinking that that's 

604
00:28:05,360 --> 00:28:09,200
necessarily the case. 
But I just became so used to 

605
00:28:09,200 --> 00:28:11,880
being told it was in my head. 
I was told as a child, I'm too 

606
00:28:11,880 --> 00:28:14,840
sensitive, I'm a prima Donna, 
I'm drama queen, you know, all 

607
00:28:14,840 --> 00:28:17,520
these things that it got to the 
point where I was just like, 

608
00:28:17,520 --> 00:28:21,200
well, guess this is just my body
being my body and I just like, 

609
00:28:21,200 --> 00:28:24,520
gave up. 
And I think you also if if you 

610
00:28:24,520 --> 00:28:27,280
don't have an ego that's out of 
control, you do take that on. 

611
00:28:27,280 --> 00:28:29,640
You think, oh, well, I must be 
at the top. 

612
00:28:29,640 --> 00:28:32,560
I must be a nervous. 
It's it's a reasonable thing to 

613
00:28:32,560 --> 00:28:33,480
do. 
It's reasonable. 

614
00:28:33,600 --> 00:28:36,080
Everyone's telling you that you 
go, you take that internal, you 

615
00:28:36,080 --> 00:28:37,920
go. 
I must be acting a bit over the 

616
00:28:37,920 --> 00:28:40,000
top at the moment. 
Especially when you're a young 

617
00:28:40,000 --> 00:28:42,520
person and it's the people in 
positions of authority like your

618
00:28:42,520 --> 00:28:46,440
parents and healthcare providers
who are reassuring you and 

619
00:28:46,440 --> 00:28:48,640
telling you, you know, we've 
done these tests or they've 

620
00:28:48,640 --> 00:28:51,480
assessed you in some way. 
Like you, you go to the hospital

621
00:28:51,480 --> 00:28:53,520
to be safe. 
And to think that you could be 

622
00:28:53,760 --> 00:28:55,920
treated in a way that makes you 
not safe is wild. 

623
00:28:56,600 --> 00:28:59,480
On top of all that, which I 
forgot to mention this the the 

624
00:28:59,480 --> 00:29:01,040
dark time. 
So yeah, all that stuff was 

625
00:29:01,040 --> 00:29:02,720
traumatic. 
But like honestly the worst 

626
00:29:02,720 --> 00:29:05,520
thing I've probably been to. 
Yeah, and this is how absurd it 

627
00:29:05,520 --> 00:29:06,600
is. 
Yeah, That stuff. 

628
00:29:06,680 --> 00:29:10,280
I mean, I need to die. 
I, I it's how much of stuff like

629
00:29:10,280 --> 00:29:11,880
this is what really annoyed me. 
Yep. 

630
00:29:12,400 --> 00:29:17,560
What really really was bad so my
mom was diagnosed with triple 

631
00:29:17,560 --> 00:29:21,000
negative breast cancer when I 
was about it was she always kept

632
00:29:21,000 --> 00:29:23,200
getting diagnosed or it became 
metastatic or ever like on my 

633
00:29:23,200 --> 00:29:25,800
birthday or around that I I 
don't like my birthday. 

634
00:29:25,800 --> 00:29:29,160
January sucks. 
But anyways, basically I was 

635
00:29:29,160 --> 00:29:32,800
like 17 turning 18 or somewhere 
in there she was diagnosed with 

636
00:29:32,800 --> 00:29:37,120
triple negative breast cancer 
stage 3B, which I think they 

637
00:29:37,120 --> 00:29:41,920
should just call it stage 4. 
But anyways, and then I, I 

638
00:29:41,920 --> 00:29:44,000
started to have worsening health
symptoms. 

639
00:29:44,000 --> 00:29:46,720
Now, whether this was related to
dealing with stress from my, my 

640
00:29:46,760 --> 00:29:50,200
mom's health or if this was, you
know, something else with, with 

641
00:29:50,200 --> 00:29:54,160
me just aging or the stress of 
being a student, who can say? 

642
00:29:54,160 --> 00:29:57,400
I think when I look at patients,
we're sensitive beings. 

643
00:29:57,440 --> 00:29:59,120
Everything affects us to some 
extent. 

644
00:29:59,480 --> 00:30:02,320
Am I going to feel pain more 
because my mom, who I love is 

645
00:30:02,320 --> 00:30:03,720
dying? 
Of course I am. 

646
00:30:04,040 --> 00:30:06,480
But is it going to make pain 
come from nowhere? 

647
00:30:06,560 --> 00:30:09,240
Yes. 
No, it doesn't. 

648
00:30:09,240 --> 00:30:11,880
Like, you know, and maybe there 
will be some study out there 

649
00:30:11,880 --> 00:30:15,080
which shows like there will be 
some study they'll disagree with

650
00:30:15,080 --> 00:30:17,640
me. 
Like I've never had a de Novo 

651
00:30:17,640 --> 00:30:20,520
health issue like out of the 
blue that I could solely 

652
00:30:20,520 --> 00:30:25,160
attribute to stress personally, 
but I had some headaches and 

653
00:30:25,160 --> 00:30:27,400
neck pain at the time. 
I'd always had that heavy head 

654
00:30:27,400 --> 00:30:30,480
sensation in school. 
I would never sit upright. 

655
00:30:30,480 --> 00:30:34,040
So I'd lie down on my desk like 
this or I'd go like this. 

656
00:30:34,680 --> 00:30:36,960
I used to sit like this. 
Yeah, yeah, I would do every my 

657
00:30:36,960 --> 00:30:38,520
binder. 
I'd always have the soft binder 

658
00:30:38,520 --> 00:30:40,800
so I could use it as a pillow. 
You know, the fabric ones that 

659
00:30:40,800 --> 00:30:43,560
zipped us Smart. 
Exactly. 

660
00:30:44,720 --> 00:30:47,640
But yeah, I am. 
I was going through all this and

661
00:30:47,640 --> 00:30:50,200
my neck pain would get worse and
worse and worse. 

662
00:30:50,200 --> 00:30:52,480
And I'd had horrific shoulder 
pain as well, which I've talked 

663
00:30:52,480 --> 00:30:55,280
about on social media. 
But it was that coat hanger 

664
00:30:55,280 --> 00:30:57,080
syndrome, what they call it, 
basically. 

665
00:30:57,440 --> 00:31:00,200
And there was a point where it 
started to progress into these 

666
00:31:00,200 --> 00:31:02,720
headaches. 
And the headaches I would 

667
00:31:02,720 --> 00:31:06,920
describe as 9 out of 10. 
I hate numbers, you know that. 

668
00:31:06,920 --> 00:31:09,640
But like I I, it was a very bad 
pain. 

669
00:31:09,640 --> 00:31:12,640
It was honestly awful. 
I would rate it up there almost 

670
00:31:12,640 --> 00:31:16,120
with how I felt when I woke up 
from my jaw surgery, which is 

671
00:31:16,120 --> 00:31:19,480
quite high given the whole face.
Yeah, take and how how old are 

672
00:31:19,480 --> 00:31:22,080
you at this point? 
2021 of the headache, so kind of

673
00:31:22,080 --> 00:31:24,320
jaw surgery was 16 and then 
headache on. 

674
00:31:24,320 --> 00:31:28,000
So it was like late teens, early
20s to kind of mid 20s ish. 

675
00:31:28,720 --> 00:31:30,880
But the headaches would. 
I remember the first time it 

676
00:31:30,880 --> 00:31:33,400
happened, I just came home and 
went straight downstairs. 

677
00:31:33,680 --> 00:31:35,760
I lay in a dark room with a 
pillow on my face. 

678
00:31:35,760 --> 00:31:38,600
Just couldn't watch anything, 
couldn't listen to anything. 

679
00:31:38,600 --> 00:31:40,760
And you remember the first time.
Yeah, yeah, I remember. 

680
00:31:40,880 --> 00:31:43,080
That's suddenly onset. 
Yeah, 100%. 

681
00:31:43,080 --> 00:31:46,200
The first time I had it, 
honestly, given the fact I'd 

682
00:31:46,200 --> 00:31:48,800
never had headaches and that was
the worst headache in my life, I

683
00:31:48,800 --> 00:31:50,400
probably should have gone to 
hospital. 

684
00:31:50,920 --> 00:31:53,360
And that's the problem. 
When you're constantly told that

685
00:31:53,360 --> 00:31:55,440
you're overreacting things, you 
don't act appropriately 

686
00:31:55,440 --> 00:31:56,920
sometimes. 
Yeah, I've never thought about 

687
00:31:56,920 --> 00:31:58,880
that before, but I'm really 
lucky that that headache wasn't 

688
00:31:58,880 --> 00:32:01,960
something serious because I 
never had headaches as a child 

689
00:32:01,960 --> 00:32:04,000
and I never had headaches in my 
early teens. 

690
00:32:04,360 --> 00:32:08,200
But I had these headaches start 
almost out of nowhere, you know,

691
00:32:08,200 --> 00:32:09,960
and probably they had been 
building up gradually, but I 

692
00:32:09,960 --> 00:32:12,880
probably just blocked them out 
until it became too much. 

693
00:32:13,400 --> 00:32:16,560
And it would feel like my eye 
was being strangled, my jaw, I'd

694
00:32:16,560 --> 00:32:19,320
have horrific tooth pain. 
It was, it's a trigeminal 

695
00:32:19,320 --> 00:32:22,000
neuralgia, probably, right. 
And I have not had an official 

696
00:32:22,000 --> 00:32:25,160
diagnosis of this, but I can 
tell you that I would get the 

697
00:32:25,360 --> 00:32:28,040
tooth and jaw pain, which 
terrified me, having had a jaw 

698
00:32:28,520 --> 00:32:32,200
bone infection as well. 
So I'm very sensitive to that 

699
00:32:32,200 --> 00:32:34,400
type of pain. 
But yeah, those headaches 

700
00:32:34,400 --> 00:32:40,080
started and they really, if I, 
if I was ever disabled, you 

701
00:32:40,080 --> 00:32:41,760
know, at a point in my life 
where I truly could not have 

702
00:32:41,760 --> 00:32:44,240
worked, had no quality of life 
and was really struggling. 

703
00:32:44,240 --> 00:32:47,920
It was those neck pain, the neck
pain and headaches because I 

704
00:32:47,920 --> 00:32:51,560
couldn't leave the house. 
And I just even like doing 

705
00:32:51,560 --> 00:32:54,560
anything other than lying in bed
in a dark room with a pillow on 

706
00:32:54,560 --> 00:32:56,760
my face. 
Like things like eating and 

707
00:32:56,760 --> 00:32:59,280
using the toilet like that was 
really, really difficult and 

708
00:32:59,280 --> 00:33:01,200
honestly thankful. 
Life just stops. 

709
00:33:01,200 --> 00:33:02,720
Yeah. 
And that's the problem, like, 

710
00:33:02,760 --> 00:33:06,920
especially when life stops, you 
can't actually function to seek 

711
00:33:06,920 --> 00:33:07,920
help sometimes. 
Yeah. 

712
00:33:07,920 --> 00:33:11,040
So you need a support. 
It never even crossed my mind. 

713
00:33:11,160 --> 00:33:13,640
I know I know. 
Also I haven't mentioned this 

714
00:33:13,640 --> 00:33:15,240
and this is like a trauma 
dumping episode. 

715
00:33:15,240 --> 00:33:17,520
So you, you all got warned with 
a disclaimer at the start. 

716
00:33:19,320 --> 00:33:22,560
Basically, my mom had gone to 
the GP, like, she interacted 

717
00:33:22,560 --> 00:33:24,960
with her GP on six different 
occasions for a year and a half 

718
00:33:24,960 --> 00:33:28,120
about the lump in her breast. 
And I saw her be routinely told 

719
00:33:28,120 --> 00:33:31,880
it was anxiety, it was menopause
symptoms, It was in her head. 

720
00:33:31,960 --> 00:33:34,040
You know, people get lumps in 
their breast all the time. 

721
00:33:34,040 --> 00:33:37,640
Don't worry. 
And it wasn't a cyst or 

722
00:33:37,640 --> 00:33:40,160
imaginary. 
It was, yeah, basically almost 

723
00:33:40,160 --> 00:33:42,800
stage 4 cancer. 
And when they found the tumor, 

724
00:33:42,800 --> 00:33:45,920
it was 9 by 13 centimeters. 
And my mom and I, like, I'm not 

725
00:33:45,920 --> 00:33:48,600
the most busty person, we shared
bras. 

726
00:33:48,920 --> 00:33:52,160
And that means like most of her 
breast was tumor, but at the 

727
00:33:52,160 --> 00:33:54,720
point it was found 9 by 13 
centimeters. 

728
00:33:55,120 --> 00:33:56,160
Very big. 
It's big. 

729
00:33:57,040 --> 00:34:01,600
So for that to be missed, you 
know, and for the specialist she

730
00:34:01,600 --> 00:34:04,080
saw to say like, you know, these
are people who were working in 

731
00:34:04,680 --> 00:34:06,840
less developed countries to be 
like this. 

732
00:34:06,880 --> 00:34:08,840
You know, you would have had 
better health care in other 

733
00:34:08,840 --> 00:34:11,480
countries. 
Then Canada was also really, you

734
00:34:11,480 --> 00:34:13,920
know, a wake up call for me at 
the time. 

735
00:34:14,639 --> 00:34:17,600
But the normalization of just 
seeking help and not being 

736
00:34:17,600 --> 00:34:20,800
listened to was so entrenched in
me at that point that I'd kind 

737
00:34:20,800 --> 00:34:23,440
of just like accepted this was 
my life and that I have to live 

738
00:34:23,440 --> 00:34:26,520
with it. 
So you think that if she'd have 

739
00:34:26,520 --> 00:34:30,360
had that diagnosis of heds and 
gone to the doctors with the 

740
00:34:30,360 --> 00:34:32,400
symptoms, you think things could
have been different? 

741
00:34:32,840 --> 00:34:38,159
I think that it I think that 
having a diagnosis of heds or 

742
00:34:38,159 --> 00:34:40,480
HSDI think one of the things 
that it really does, which is 

743
00:34:40,480 --> 00:34:45,000
helpful is it helps people know 
that they're not imagining 

744
00:34:45,000 --> 00:34:46,120
things. 
I think that's the most 

745
00:34:46,120 --> 00:34:51,159
important thing. 
And when it comes to the book, 

746
00:34:51,159 --> 00:34:53,560
for example, like, something I 
haven't talked about much on 

747
00:34:53,560 --> 00:34:57,680
social media, but that's really 
important to me is that I will 

748
00:34:57,680 --> 00:35:02,440
always feel like my mom, maybe 
her today, if she was better 

749
00:35:02,440 --> 00:35:06,520
able to advocate for herself and
she'd been better able to trust 

750
00:35:06,520 --> 00:35:08,280
how she felt in her body. 
Yes. 

751
00:35:08,680 --> 00:35:13,000
But because she had a lifetime 
of muscle and joint pain and gut

752
00:35:13,000 --> 00:35:15,760
issues and different things that
she, like, coped. 

753
00:35:15,840 --> 00:35:18,120
I don't even know how she coped 
with a lot of it, to be honest. 

754
00:35:18,120 --> 00:35:21,200
But she just somehow she pushed 
through it like many people do, 

755
00:35:21,200 --> 00:35:23,800
like many people listening and 
watching this podcast just do. 

756
00:35:23,840 --> 00:35:26,560
Yeah. 
What really upsets me is that, 

757
00:35:26,560 --> 00:35:29,680
like, she got to that critical 
health issue where she needed to

758
00:35:29,680 --> 00:35:34,120
be able to listen to her body 
and to trust herself and, you 

759
00:35:34,120 --> 00:35:37,360
know, to really push for that 
second opinion or that medical 

760
00:35:37,360 --> 00:35:40,400
imaging study or whatever. 
And instead of being able to do 

761
00:35:40,400 --> 00:35:43,120
that, she did, you know, what I 
then went on to do in some 

762
00:35:43,120 --> 00:35:45,760
health situations myself, which 
is to say, look, the doctor says

763
00:35:45,760 --> 00:35:46,600
it's fine. 
I've talked with them 

764
00:35:46,600 --> 00:35:48,840
repeatedly. 
It must be fine, like, and, and 

765
00:35:48,840 --> 00:35:53,520
she, I just believe that she 
would have felt so, like her 

766
00:35:53,520 --> 00:35:56,080
experience had been so 
validated, her life experience 

767
00:35:56,160 --> 00:36:00,160
by a diagnosis or even even if 
she couldn't access a diagnosis.

768
00:36:00,160 --> 00:36:02,760
And again, many people can't, 
you know, the situation in the 

769
00:36:02,760 --> 00:36:05,440
UK we've talked about on other 
episodes, it's difficult to have

770
00:36:05,440 --> 00:36:06,600
a diagnosis. 
Yeah. 

771
00:36:06,600 --> 00:36:09,800
Even if she couldn't, knowing at
least that there was a plausible

772
00:36:09,800 --> 00:36:12,920
rationale for her life, her 
symptoms. 

773
00:36:13,240 --> 00:36:16,040
Yeah. 
So I do think I wish I could, 

774
00:36:16,200 --> 00:36:18,080
you know, almost run a 
simulation and see what would 

775
00:36:18,080 --> 00:36:21,120
have happened if she was not 
told, Oh, it's because you're 

776
00:36:21,120 --> 00:36:22,400
anxious. 
It's because you're sensitive. 

777
00:36:22,400 --> 00:36:25,360
It's in your head, like if she'd
been told, hey, you know, there 

778
00:36:25,360 --> 00:36:27,000
are reasons why this is 
happening. 

779
00:36:27,720 --> 00:36:29,440
So that's. 
Very sad too. 

780
00:36:29,520 --> 00:36:32,640
I'll never I'll never know, but 
that's my that is my personal 

781
00:36:32,640 --> 00:36:33,560
yeah. 
Passion. 

782
00:36:34,320 --> 00:36:35,840
Someone wanted a guess on the 
podcast. 

783
00:36:35,840 --> 00:36:37,640
She's like, why, how, why do you
do this? 

784
00:36:37,640 --> 00:36:38,840
Like, how do you make this 
viable? 

785
00:36:38,840 --> 00:36:42,560
And I'm just like, that's a 
great question, but it's really 

786
00:36:42,600 --> 00:36:44,000
it's just it's. 
Burning. 

787
00:36:44,320 --> 00:36:47,960
Yeah, it's so important. 
Burning 100%, this is this is 

788
00:36:47,960 --> 00:36:51,480
critical and this type of health
awareness and this type of 

789
00:36:51,480 --> 00:36:54,480
information about HDS and HSD, 
it does save lives. 

790
00:36:54,680 --> 00:36:56,400
And yeah, I will always feel 
that way. 

791
00:36:56,960 --> 00:37:00,960
It does I think you know, 
because I I started my TikTok 

792
00:37:02,680 --> 00:37:05,720
would and I am someone who has 
never even taken a selfie up 

793
00:37:05,720 --> 00:37:07,800
until that point. 
I wow hate it. 

794
00:37:08,320 --> 00:37:10,480
I hate it. 
You know yourself. 

795
00:37:10,480 --> 00:37:12,360
It's virtually impossible to get
a picture of me I've. 

796
00:37:12,360 --> 00:37:18,400
Taken just. 
Dodge and it came partially from

797
00:37:18,400 --> 00:37:22,520
a place of feeling that burning.
And I don't want to say it's not

798
00:37:22,520 --> 00:37:25,840
a rage, but it's a quiet rage 
and you have to turn into 

799
00:37:25,840 --> 00:37:28,080
something constructive otherwise
it just eats you up. 

800
00:37:28,640 --> 00:37:31,320
So for me, I wanted to talk to 
other people and figure this out

801
00:37:31,320 --> 00:37:34,680
as well. 
But it, it, it was something 

802
00:37:34,680 --> 00:37:37,240
therapeutic for me. 
And I think if, if I'd, if I 

803
00:37:37,240 --> 00:37:39,440
didn't even have the same family
history that you've had with, 

804
00:37:39,520 --> 00:37:42,360
with your mum dying. 
So yeah. 

805
00:37:42,600 --> 00:37:45,120
And understand. 
No. 

806
00:37:45,720 --> 00:37:47,040
And. 
You have, you're entitled to 

807
00:37:47,040 --> 00:37:48,760
your own experience. 
I think too, there's always this

808
00:37:48,760 --> 00:37:50,880
like comparison. 
I think we all do it because we 

809
00:37:50,880 --> 00:37:53,320
live with other people. 
But like, I remember my mom 

810
00:37:53,320 --> 00:37:55,800
would be dying and I would be 
having the horrific pain I had 

811
00:37:55,800 --> 00:37:58,920
my friend would stub her toe or 
something and like that sucks. 

812
00:37:58,960 --> 00:38:02,800
Like just things are all allowed
to be lousy in different ways. 

813
00:38:02,800 --> 00:38:05,360
You know, I agree. 
I totally get that. 

814
00:38:06,000 --> 00:38:09,720
In terms of my personal 
experience. 

815
00:38:09,720 --> 00:38:11,360
I want to get into that more 
with you. 

816
00:38:11,360 --> 00:38:14,000
We will get into that more in 
your episode, I think. 

817
00:38:14,000 --> 00:38:15,960
Let's talk. 
Yeah, we'll touch on the PCOS 

818
00:38:15,960 --> 00:38:19,440
because my whole journey started
actually with addressing my PCOS

819
00:38:19,440 --> 00:38:23,120
and an argument I had with my 
doctor about how I didn't meet 

820
00:38:23,120 --> 00:38:26,480
the diagnostic criteria and I 
was too skinny, even though 

821
00:38:26,600 --> 00:38:29,480
weight appears nowhere on the 
diagnostic criteria. 

822
00:38:30,520 --> 00:38:32,400
But let's get into that more 
when I talk. 

823
00:38:32,400 --> 00:38:34,960
With you, I know and and we can 
talk about how I had the 

824
00:38:34,960 --> 00:38:38,240
opposite experience of, of my 
consultant saying, well, you 

825
00:38:38,240 --> 00:38:43,800
have a very PCOS figure and I 
said great, but yeah, it's 

826
00:38:45,240 --> 00:38:48,000
different, different, different,
but the same. 

827
00:38:48,280 --> 00:38:50,040
Same but different. 
We'll get into that more. 

828
00:38:50,040 --> 00:38:53,400
But if we Fast forward like back
up to the the book and so on, I 

829
00:38:53,400 --> 00:38:59,120
think for me, it's about like 
people being able to access a 

830
00:38:59,360 --> 00:39:01,960
guide. 
I just, yeah, I don't know, I I 

831
00:39:01,960 --> 00:39:03,480
do know how I got to where I am 
today. 

832
00:39:03,480 --> 00:39:06,200
And it's through a lot of trial 
and error, a lot of luck. 

833
00:39:06,440 --> 00:39:08,360
Yeah. 
And I would literally spend 

834
00:39:08,560 --> 00:39:12,840
Friday nights in my 20s just on 
pub Med, reading research papers

835
00:39:12,840 --> 00:39:15,800
instead of being with my 
friends, which probably probably

836
00:39:15,800 --> 00:39:17,600
explains most of my social 
issues today. 

837
00:39:18,760 --> 00:39:24,920
But that type of like, it's just
that sheer, that sheer times 

838
00:39:24,920 --> 00:39:27,560
amount of time spent doing this 
kind of trial and error 

839
00:39:27,560 --> 00:39:30,160
approach. 
Yeah, that helped me a lot with 

840
00:39:30,160 --> 00:39:32,880
the muscle and joint pain. 
I was lucky again, because I'd 

841
00:39:32,880 --> 00:39:36,000
had some physiotherapy, you 
know, manual therapy in my 

842
00:39:36,000 --> 00:39:37,840
teens. 
It didn't do anything. 

843
00:39:37,840 --> 00:39:39,280
It actually made my symptoms 
worse. 

844
00:39:39,480 --> 00:39:42,200
The exercises I was given made 
my symptoms worse, and I was 

845
00:39:42,200 --> 00:39:45,560
blamed for doing them wrong as 
well, which really annoys me. 

846
00:39:45,880 --> 00:39:47,480
So I had a very negative 
experience there. 

847
00:39:47,480 --> 00:39:51,320
And it's only through luck that 
I was able to actually give 

848
00:39:51,320 --> 00:39:54,240
manual therapy and exercise a 
second chance. 

849
00:39:55,760 --> 00:39:59,480
But a lot of my 20s was just 
kind of spent doing this trial 

850
00:39:59,480 --> 00:40:02,680
and error, you know, kind of 
becoming, I think eventually I 

851
00:40:02,680 --> 00:40:04,560
became the healthcare provider I
needed. 

852
00:40:04,760 --> 00:40:07,400
Yeah, yeah. 
And I think things would have 

853
00:40:07,400 --> 00:40:10,720
been a bit different if you had 
access to a book where it laid 

854
00:40:10,720 --> 00:40:13,320
it out a little bit more. 
Just absolutely. 

855
00:40:13,320 --> 00:40:17,280
Just a little explanation, a 
little map, a few answers to 

856
00:40:17,280 --> 00:40:19,760
questions I was dying to 
probably know the answer to. 

857
00:40:19,760 --> 00:40:21,120
Like, so. 
So to give you an idea of the 

858
00:40:21,120 --> 00:40:24,480
structure of the book, the first
few chapters we talk about 

859
00:40:24,480 --> 00:40:26,760
diagnosis. 
We talk about relevant anatomy 

860
00:40:26,760 --> 00:40:29,440
and Physiology in a fun and 
accessible way. 

861
00:40:29,480 --> 00:40:31,120
Yeah. 
Because I hate boring. 

862
00:40:31,320 --> 00:40:31,960
You know that. 
Yeah. 

863
00:40:32,800 --> 00:40:35,960
And but I also love science. 
And I think that this is really,

864
00:40:36,120 --> 00:40:38,360
this knowledge is important 
because it empowers patients to 

865
00:40:38,360 --> 00:40:40,680
ask questions. 
So when that patient is talking 

866
00:40:40,680 --> 00:40:42,920
with their physiotherapist or 
their osteopath or whatever, 

867
00:40:42,920 --> 00:40:45,160
talking with their medical 
doctor, they can say, you know, 

868
00:40:45,160 --> 00:40:47,080
OK, you're saying this, but what
about this? 

869
00:40:47,320 --> 00:40:50,120
It gives them that voice that I 
wish more people had. 

870
00:40:50,120 --> 00:40:52,440
And I wish that I'd had, and I 
wish that my mom had. 

871
00:40:53,120 --> 00:40:54,880
But as well. 
The second-half of the book is 

872
00:40:54,880 --> 00:40:58,440
an FAQ so I can ask most random 
questions on social media. 

873
00:40:58,440 --> 00:40:59,680
He's. 
Just going to ask you, is that 

874
00:40:59,680 --> 00:41:02,080
why you wrote the book? 
Because you were getting random 

875
00:41:02,080 --> 00:41:03,920
questions. 
It's because I always give the 

876
00:41:03,920 --> 00:41:05,040
same answers and that's 
something. 

877
00:41:05,040 --> 00:41:07,880
I'm quite proud of. 
Is I take a very principles 

878
00:41:07,880 --> 00:41:11,160
based and science based 
approach, so I'm open if I get 

879
00:41:11,160 --> 00:41:13,240
something wrong, tell me there 
are some things where probably 

880
00:41:13,240 --> 00:41:15,560
haven't said things perfectly. 
If if people ever see Conan, you

881
00:41:15,560 --> 00:41:17,520
can tag me in and I'll address 
it or whatever, right? 

882
00:41:17,560 --> 00:41:19,960
But for the most part, I've gone
in things, in my opinion, 

883
00:41:19,960 --> 00:41:23,000
certainly right. 
And I haven't had to change my 

884
00:41:23,000 --> 00:41:25,680
position much because we're 
looking at Physiology and 

885
00:41:25,680 --> 00:41:29,320
anatomy and some of the small 
amount of research that's that's

886
00:41:29,320 --> 00:41:31,400
done on this subject, which 
there isn't as much as there 

887
00:41:31,400 --> 00:41:33,640
should be. 
Yeah, but in the in the, sorry, 

888
00:41:33,640 --> 00:41:35,960
on social media, I get asked so 
many questions like what bra 

889
00:41:35,960 --> 00:41:38,040
should I wear? 
Like what type of exercise? 

890
00:41:38,200 --> 00:41:39,960
Everything. 
For hypermobility, yeah. 

891
00:41:40,040 --> 00:41:41,640
Yeah, every. 
Question. 

892
00:41:41,880 --> 00:41:44,560
Honestly home decor. 
Like we've talked about careers 

893
00:41:44,560 --> 00:41:47,280
in this field, I'm waiting for 
like a hypermobility interior 

894
00:41:47,280 --> 00:41:49,560
designer. 
I have thoughts on everything 

895
00:41:49,560 --> 00:41:52,800
from fashion to home decorating.
It affects everything. 

896
00:41:52,840 --> 00:41:55,400
Yeah, Oh my gosh. 
Like a pan I buy for my kitchen 

897
00:41:55,400 --> 00:41:56,720
stove. 
Like I'm looking at the weight. 

898
00:41:56,720 --> 00:41:59,720
How do the handles feel like? 
Does it feel OK? 

899
00:41:59,760 --> 00:42:01,320
Is it the texture? 
It's your nightmare. 

900
00:42:01,320 --> 00:42:03,240
It's easy to clean because I'm 
tired, OK? 

901
00:42:03,920 --> 00:42:07,040
That's very true. 
So look, it's basically my brain

902
00:42:07,040 --> 00:42:09,160
in a book and if you like my 
content you will love my book 

903
00:42:09,160 --> 00:42:11,720
and if you don't then please, 
you'll enjoy it. 

904
00:42:13,360 --> 00:42:16,280
No, I can tell that from the 
snippets that you've shown me. 

905
00:42:16,280 --> 00:42:18,000
I thought this is a very Alex 
book. 

906
00:42:18,600 --> 00:42:20,560
It's very much like, tell me 
what I need to know. 

907
00:42:20,560 --> 00:42:22,360
Oh, there's a nice little 
drawing that she's doing now. 

908
00:42:22,480 --> 00:42:24,120
Oh. 
Oh, there's a chart. 

909
00:42:24,120 --> 00:42:25,400
OK, back to the science. 
Yeah. 

910
00:42:25,800 --> 00:42:27,480
Useful. 
Information with fundamental 

911
00:42:27,480 --> 00:42:29,640
tangents in a cute little 
package. 

912
00:42:29,720 --> 00:42:34,560
But it was written in part in 
the town where Dracula is 

913
00:42:34,560 --> 00:42:36,720
supposed to have landed. 
So I think you took some 

914
00:42:36,720 --> 00:42:38,760
inspiration from that a little 
bit, just a little. 

915
00:42:38,760 --> 00:42:40,400
Bit it was, honestly. 
Of chaos. 

916
00:42:40,400 --> 00:42:44,280
There were dark times and yeah, 
the the whole field is chaotic, 

917
00:42:44,280 --> 00:42:46,280
quite frankly. 
Living with HDS or HSD, You 

918
00:42:46,280 --> 00:42:47,960
know, going back to that first 
question at the start of this 

919
00:42:47,960 --> 00:42:50,440
episode, what's it like? 
Yeah, what's it like? 

920
00:42:50,800 --> 00:42:53,320
Organized chaos. 
I best organized it where it's 

921
00:42:53,320 --> 00:42:55,640
not organized, but yeah, we deal
with it. 

922
00:42:56,120 --> 00:42:59,360
No, I feel that. 
Any last question for today? 

923
00:43:00,360 --> 00:43:05,560
I would like to know how so you 
talked about your childhood was 

924
00:43:05,680 --> 00:43:09,640
difficult with pain and 
surgeries and fractured bones 

925
00:43:09,680 --> 00:43:15,680
and just gut and then you went 
to the dark times of the neck 

926
00:43:15,680 --> 00:43:17,960
and head pain and jaw, all that 
jazz. 

927
00:43:18,120 --> 00:43:20,240
How did you get from there to 
here? 

928
00:43:20,240 --> 00:43:21,760
Because you said that you do 
quite well. 

929
00:43:21,760 --> 00:43:23,760
You're at the CrossFit, the 
CrossFit. 

930
00:43:23,760 --> 00:43:28,960
So how's how have you gone from 
there to here? 

931
00:43:30,240 --> 00:43:32,600
Slowly and carefully, I would 
say. 

932
00:43:33,240 --> 00:43:35,560
So one thing that really helped 
me is that when I was going on 

933
00:43:35,560 --> 00:43:37,720
my journey, social media was not
a big thing. 

934
00:43:37,720 --> 00:43:40,480
Yeah. 
So I had no money and social 

935
00:43:40,480 --> 00:43:43,200
media didn't exist. 
So I would go to a local gym by 

936
00:43:43,200 --> 00:43:46,680
myself and I would just try and 
find a movement that I could do.

937
00:43:46,760 --> 00:43:49,840
Like I would be so happy when 
I'd find one random exercise 

938
00:43:49,840 --> 00:43:50,720
that I could do. 
Yeah. 

939
00:43:51,360 --> 00:43:53,480
And I would then do that 
exercise and then I'd find 

940
00:43:53,520 --> 00:43:55,680
another exercise. 
And it was just kind of this 

941
00:43:55,680 --> 00:43:58,400
like collecting these these 
almost these bread crumbs. 

942
00:43:58,400 --> 00:44:00,720
I was talking to the patient 
about this earlier this morning.

943
00:44:01,040 --> 00:44:03,600
When people try to do like, 
here's the protocol. 

944
00:44:04,520 --> 00:44:06,160
You see that a lot. 
Yeah, and it doesn't work 

945
00:44:06,160 --> 00:44:07,480
because everyone's needs are 
different. 

946
00:44:07,480 --> 00:44:09,600
So I was finding what worked for
me. 

947
00:44:09,960 --> 00:44:11,920
And by moving, I was building 
muscle mass. 

948
00:44:11,920 --> 00:44:16,600
I was improving my other bodily 
systems and my health in general

949
00:44:16,720 --> 00:44:19,040
as much as I could. 
And because I didn't have 

950
00:44:19,040 --> 00:44:21,120
pressure, oh, you should 
exercise this many times per 

951
00:44:21,120 --> 00:44:23,920
week in this way. 
I just, I went when I felt like 

952
00:44:23,920 --> 00:44:25,800
it. 
I did not go when I couldn't, 

953
00:44:25,800 --> 00:44:26,680
you know. 
Yeah. 

954
00:44:26,720 --> 00:44:31,400
So it was just that little bit 
of consistent, consistently 

955
00:44:31,400 --> 00:44:33,440
putting in effort. 
It is effort, 100%. 

956
00:44:33,440 --> 00:44:34,600
Sorry about that. 
Yeah. 

957
00:44:34,600 --> 00:44:38,440
Putting in effort and giving it 
time. 

958
00:44:38,440 --> 00:44:41,400
For me it was like a A5 year 
journey. 

959
00:44:41,400 --> 00:44:44,080
It's a long experiment. 
Yeah, literally kind of 

960
00:44:44,080 --> 00:44:46,240
experiment, you know, myself and
be safe, of course. 

961
00:44:46,240 --> 00:44:49,120
And ideally, if you can access a
healthcare provider who can 

962
00:44:49,120 --> 00:44:51,600
support you in this area, that's
fantastic. 

963
00:44:51,600 --> 00:44:53,240
It will help you have progress 
faster. 

964
00:44:53,440 --> 00:44:56,040
It will help you be safe. 
But if you're someone who's 

965
00:44:56,040 --> 00:45:00,480
dealing with this on your own, I
think that certainly finding 

966
00:45:00,920 --> 00:45:02,880
exercises that make you feel 
safe. 

967
00:45:02,920 --> 00:45:05,320
I'm always asking myself, do I 
feel safe when I do this? 

968
00:45:05,320 --> 00:45:06,960
Does it feel good? 
Do I love it? 

969
00:45:07,400 --> 00:45:11,880
If not lapu bell, like the lapu 
bell guy on TikTok, he is my 

970
00:45:11,880 --> 00:45:12,920
hero. 
I love him. 

971
00:45:13,200 --> 00:45:15,880
We are putting so much stuff in 
lapu bell and exercises that 

972
00:45:15,880 --> 00:45:17,800
hurt you or that you do not 
love. 

973
00:45:18,000 --> 00:45:21,280
Yeah, Lapu Bell and that's so 
different from what a lot of us 

974
00:45:21,280 --> 00:45:24,120
have gone through with physios 
and gyms where it's the push 

975
00:45:24,120 --> 00:45:26,320
through culture. 
So it's interesting that you 

976
00:45:26,920 --> 00:45:28,600
take the opposite approach 
sometimes. 

977
00:45:28,880 --> 00:45:31,640
My first question when I give a 
patient exercise and they're not

978
00:45:31,640 --> 00:45:35,440
sure about it, I'm like, have I 
not explained it clearly enough?

979
00:45:36,040 --> 00:45:38,920
Is there something going on 
where the patient perhaps is not

980
00:45:38,920 --> 00:45:40,400
doing it well? 
But I'm looking first at me. 

981
00:45:40,400 --> 00:45:42,760
I'm not blaming the patient and 
thinking, oh, they're weak, they

982
00:45:42,760 --> 00:45:44,960
need to stop complaining and 
work harder. 

983
00:45:45,320 --> 00:45:48,560
I'm saying has there been a 
communication mismatch here in 

984
00:45:48,560 --> 00:45:51,440
some way? 
And sometimes despite everything

985
00:45:51,440 --> 00:45:53,080
being perfect, I've explained it
perfectly. 

986
00:45:53,080 --> 00:45:55,800
The patient is listened 
carefully, they're doing it as 

987
00:45:55,800 --> 00:45:57,920
correctly as possible. 
It's still not right. 

988
00:45:58,080 --> 00:46:00,000
Yeah. 
So we then there's a million 

989
00:46:00,000 --> 00:46:03,040
ways to move with one of the. 
I say good in a joking way, but 

990
00:46:03,040 --> 00:46:05,360
one of the kind of good things 
with HDS or HSD. 

991
00:46:05,360 --> 00:46:07,880
Is there a different things you 
can work on? 

992
00:46:07,880 --> 00:46:10,320
Yeah, I could focus more on 
makeup issues, more on my 

993
00:46:10,360 --> 00:46:14,120
strength issues, more on this, 
You know, and even when it comes

994
00:46:14,120 --> 00:46:17,240
to CrossFit, I call it Alex Fit 
because like I don't do proper 

995
00:46:17,240 --> 00:46:19,560
CrossFit, so I just like. 
You're the problem child. 

996
00:46:20,440 --> 00:46:22,880
Exactly but. 
Don't worry about me, I'm going 

997
00:46:22,880 --> 00:46:24,840
to do it this way. 
I'm the weird one in the corner 

998
00:46:24,840 --> 00:46:27,080
just doing my own thing. 
So like finding an environment 

999
00:46:27,080 --> 00:46:28,560
where you can embrace your 
weird. 

1000
00:46:28,600 --> 00:46:31,640
I think that is if we're going 
to close on something for today,

1001
00:46:31,640 --> 00:46:34,880
I think that is like a key thing
is finding what works for you 

1002
00:46:34,880 --> 00:46:37,840
and being unapologetic about it.
Yeah, definitely. 

1003
00:46:38,080 --> 00:46:40,640
I think that's where you need to
have some knowledge of what's 

1004
00:46:40,640 --> 00:46:42,440
going on to have the confidence 
to go now. 

1005
00:46:42,440 --> 00:46:44,920
I'm going to do it this way. 
This way feels right to me. 

1006
00:46:45,320 --> 00:46:47,760
Absolutely. 
And whether that is something 

1007
00:46:47,760 --> 00:46:51,040
you develop over time, if you 
have the time or you go into 

1008
00:46:51,040 --> 00:46:54,600
this field maybe, or if you hire
a professional and they're able 

1009
00:46:54,600 --> 00:46:56,560
to help you, that's, that helps 
a lot. 

1010
00:46:56,560 --> 00:46:59,480
But yeah, it's becoming the the 
person, you know, becoming the 

1011
00:46:59,480 --> 00:47:02,920
expert of you almost, and being 
able to help, you know, manage 

1012
00:47:02,920 --> 00:47:06,040
things in an, in an active way, 
which is hard and tiring. 

1013
00:47:06,280 --> 00:47:08,600
And reading scientific research 
is difficult and making 

1014
00:47:08,600 --> 00:47:12,080
decisions is not easy. 
But none of this is easy. 

1015
00:47:13,640 --> 00:47:17,520
On that mildly depressing note, 
we shall have to wrap up for 

1016
00:47:17,520 --> 00:47:18,880
today. 
I know there might be more 

1017
00:47:18,880 --> 00:47:20,280
questions. 
I think we should do this again 

1018
00:47:20,280 --> 00:47:21,480
someday. 
I agree. 

1019
00:47:21,680 --> 00:47:23,920
Maybe in New Zealand where 
you're moving, who knows? 

1020
00:47:24,320 --> 00:47:27,400
I mean, if you're going to going
to take a work trip anywhere and

1021
00:47:27,400 --> 00:47:29,960
you see that. 
We shall see. 1st on the list. 

1022
00:47:29,960 --> 00:47:31,800
1st on the list. 
Hannah, thank you so much for 

1023
00:47:31,800 --> 00:47:33,000
having me. 
Thank you that and me. 

1024
00:47:33,000 --> 00:47:36,120
I can't wait to talk with you 
about some other things on your 

1025
00:47:36,120 --> 00:47:37,960
episode. 
Take care. 

1026
00:47:38,320 --> 00:47:41,640
Thank you again for joining us 
today and I will see you for the

1027
00:47:41,640 --> 00:47:43,240
rest of this episodes this 
season. 

1028
00:47:43,240 --> 00:47:44,280
It's going to be a blast.