Welcome to staying connected, a podcast where I
talk to people about their stories with feds,
mar fan, louise s, and related vascular and
aortic connective tissue condition
The views, information and opinions in this podcast
are those of the individuals involved the information
presented does not constitute medical or other professional
advice or services.
For
Welcome back to a new season of staying
connected.
This season, you'll hear from 7 people in
our community about their stories with vets. Mar
and Lo s, including 2 people who have
a variant of uncertain significance or Vu us
on call 3A1.
The gene associated with beds.
Today, we're gonna kick off the season by
talking with Carlos Horn who is diagnosed with
vets in 20 23.
Before we get into the interview, I am
very happy to share a new way to
support the show. Merch.
Saying connected now has merch.
Including tote bags and t shirts and several
different designs, which you can use to share
your story or raise awareness about these conditions
out and about, There will be a link
to the store in the episode show notes
and I expect more designs will be added
as time goes on. If you like this
show and you wanna help communities raise awareness
of events, Marvin and Lo seats. You can
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way our support the podcast and the show
wouldn't be possible without the continued support of
my subscribers there. If you've already been supporting
the show there, thank you. To Let's get
into the interview.
Thanks so much for joining the podcast to
share your story with vascular Ehlers, Danlos syndrome
or beds. Do you wanna introduce yourself to
people who don't know you already?
Sure. My name is Carlos.
I'm 46. I was recently diagnosed with
beds, vascular Ehlers danlos syndrome, and I'm from
I was born some originally from Los Angeles,
but I was lived in Arizona a lot
of years. And you said that you were
diagnosed recently, Like, how recently was this diagnosis?
It was in the early part of last
year, so 20 23.
So how did this diagnosis come about for
you
at, like, you know,
mid forties? Like, how how did this happen?
So interesting thing.
I I had a... I guess,
The stroke when I was, what, 38. So
was around 2016
or 17.
So roughly around 38 and went to the
hospital,
it wasn't
a major stroke, but it was a stroke,
you know, I was...
Impair impair from any type of movement or
anything for a few seconds, so it was
pretty scary.
But I've never experienced it, so I didn't
think much of it because I was able
to
kind of
catch my breath, catch myself, sit back down
and kind of shake everything off after a
few minutes and resting 15 20 minutes. So
didn't think much of it, but I was
having some other type of complications as far
as my health goes, so I went to
see the doctor about a week later and
mentioned it, and
we started running some,
Well, he's he
requested a bunch of... Away mris eyes and
cat scans because of the stroke in my
head and then... And saw it was a
stroke, but
again, he mentioned that it was it was
small. He didn't really think nothing of it
either. He just said
possibly because of the scarring and it wasn't...
There wasn't a major signs of it. But
when I was also complaining about my other
issues, I think it was stomach issues at
that time. He had requested a full body
scan and,
forgot it at that time where those was
cat scan or my both or whatever it
was. But, later on, you had come back
and mentioned that I had the aneurysms and
also blood clots.
So
We dressed the blood clots. You put me
on black thinner, but he just said let's
progress.
Let's keep progress on and let's keep... Hopefully
it's progresses and the blood clots go away,
take care of themselves and unless just keep
an eye on you. But we didn't really
get into any details, and and, you know,
it it wasn't
it it was more of, like,
I guess because I was health I was
healthy, and they didn't see much or a
need of to check into it much further.
We kinda put it on the back burner,
just let's just monitor you. Right?
I moved to Arizona and mike, insurance changed.
So I had a couple different doctors between
that point... At between that time period of
me moving back to California,
And
when I moved back to California,
you know, I... Again, I was healthy. So
I was always I was into the gym,
I was I in crossfit. I was hitting
hard pretty good at that time for about
a year straight, going 4 or 5 days
a week.
I was watching my nutrition. So I was...
To myself, I I was doing At the
same time.
I was I was healthy. I was like,
okay. I'm on top of, I feel young.
I feel good. Yeah. And all of a
sudden, I I didn't at 1 time. I
just came to me. I I didn't feel
good at all, like, terrible, and I had
no reason why
I didn't know why I was feeling bad.
I just was, and it was feeling really
bad. Some, like, a bad hangover.
And I was going on for a couple
of days. My sister suggests to go to
the hospital or go tell my doctor checked
for the blood clots. She's a nurse. So
she said ask about the gl clots and
check into all that stuff.
And I ended up calling and they sent
me to urgent care instead. So went into
urgent care, and my blood pressure's is really
high, and, I mean, extremely high. And, you
know, before that, I had a a couple
of blood pressure problems. I mean, it wasn't...
Major wasn't
where they were like, oh, well, you know,
we need to put you on blood pressure
measures it's more like you know, loose weight,
or, you know if you keep up the
weight and keep up the high blood pressure.
We may need to chu is, but I
lost the weight.
So we didn't, see no need and also,
a lot of times, they would take my
blood pressure and then wait and then take
it again, it would be down.
And so we kinda just
blew it off. Right? Yeah.
So
I go to the doctor at that point,
urgent care and
They're just feeling bad.
So basically, at that point,
I think at that time, I was working
with the nurse, and she had mentioned that,
okay. She gave me some aspirin. She's like,
well, we may need to put you on
blood pressure medicines, but let's monitor it.
Let's just see if it's a 1 time.
Go home, make sure you rest.
And then if it's high again, come back
in, and then we'll see Bug you into
the doc and see if we can get
you on some blood pressure medicine because we
can see that,
you know,
obviously, losing weights it's not gonna fix it
because you're not obese. I mean, I was
a little overweight, But, I mean, nothing to
the point where would they have to worry
about it.
The next day, it was literally the next
day I just felt, like, terrible.
It's hard to explain it. If if you
have really, really hard blood pressure, you would
know it and understand it,
but it's like,
you feel really out of energy tired,
exhausted. Like, you really don't wanna get out
of bed then kind of, like, not too
bad of a hangover, but really, like,
light handed. I wanna say, maybe, I don't
know it's hard it's stuff to explain the
the feeling physically.
But I felt just bad and I I
just... Told my sister, you know, I'm gonna
go, and I called him... I called the
Kaiser and
the nurse and the nurse come into
immediately. So I went into the. And That
was the doctor that...
So thank him. I I thank him and
I appreciate he was there. That was the
doctor that kind of
opened my eyes and and said, you know,
the he came in with my chart and
said immediately off the bat. Before we even
did anything. He's well, you had a stroke.
He should be on aspirin and you should
be on high blood pressure medicine, you we
should be monitoring. You should be on a
preventive maintenance plan. And whatnot. And I'm like,
okay, and maybe I should be, but, you
know, I'm not a doctor. You know.
How much time was between?
When those... Because you you mentioned these aneurysms
that they found
before.
And then you moved Right to Arizona,
And then eventually, you moved back to California,
and that takes us to where,
you know, you're having this.
Experience that you're talking about now and you're
in the hospital, and this doctor's like, whoa,
hey, there's a stroke in your chart. There's
aneurysms in your chart, like, how much time
is between these events.
So that all... That diagnosis and what I
was working with... My doctor at that time
was in 2017,
between 2017
and 2018,
So roughly around 4 and a half almost
5 years. Yeah. So continue then. I just
wanted to get a... I wanted to get
a better understanding of that time.
That time span, and then we'll we'll talk
more about
the aneurysms.
Yes. So, at that point, he said he
want me... He... He put me on... He
came he come in.
He wants me to rest.
They put me on blood pressure medicine,
and he said, on An aspirin every day,
1 aspirin a day in your blood pressure
medicine, keep on that, and let's bring you
in for a,
checkup up you know, in a couple of
weeks. He was I want you to follow
up with your primary care because we need
to look into this a little further.
So I says, okay, You know, he was
give it a couple of weeks, So a
couple of weeks went by, but, you know,
is the first time I ever taken blood
pressure medicine, so I kind of went through
the motions of that. And when you take
blood pressure medicines, some don't react well with
you.
So, you know, the first 1 was I
was just having migraine headaches, I never had
in my life the worse. Like the absolute
worst.
So we kinda played around with different... A
couple of different medicines, couple different dosages until
we got this 1. And finally, I can
take this 1 and function,
without issues. And that went on for a
few weeks until I started feeling better.
So I finally ended up taking that medicine
and kind of adapting to it, acc acclimated
to everything.
And then I followed up with my primary,
and we went in and
We had a couple visits, and we talked
about what happened, and they were going over
my charts. And
at that point, it was, like, okay. My
primary says, let's go ahead and he was...
It they said it's been a while since
we've had your scans.
Let's go ahead and do the complete body
scan again that you had 5 years ago.
Wanna see what's going on with that, because
we do see that she's had a bunch
of aneurysms, No one's ever really addressed that.
So I do the body scans.
And we come back. And a couple of
doctors, different doctors, primaries I've had in that
time period because at times, you can't always
see the same doctor right in the office.
So they were collaborating, I guess or whatnot.
So I would go see the other 1,
and they came to consensus of we're gonna
send you to a specialist.
So they sent me to a vascular specialist
and
the vascular specialist in Riverside. She really knows
her stuff. She's really good to pleasant to
work with.
And really thorough, is she kept she asked
for as as many... As much as she
could as far as ultrasound of my stomach
cat scans, Mri.
It be as much as she could without
putting me in in more danger right because
of all the radiation and whatnot. So she
wanted to limit the the type of rays
and and how many I got But she
got as much as she could and much
information she comes back and says,
you know,
I see there's stuff going on, but And
I have... She goes... It's like AAA shot
on to left field. I wanna send you
to a genetic specialist because I wanna have
you scan or I want to have you
tested for or for something.
And
I don't... You know, at that point, I'm
I'm, like, I'm listening, but
I'm I'm zoning some of the stuff out
just because of fear I guess, or what
it may be? Maybe some type of fear,
So I know something's wrong with me, but
I'm not comprehend handing of the details of
it, and I'm not wanting to soak in
what she's telling me. I'm just hearing the
direction of, like, okay. I'll need to go
to the stop and get tested or whatnot.
So
I'm not sure if she actually ex... Blame
to me and what she was gonna test
me for
exactly. And
the details of it
because I had no clue of of beds,
and I've never heard of it before or
anything.
So she just told me she was gonna
send it to me and what she said
after that was kind of 1 at the
other.
So basically, at that point, it's wait for
the genetic specialist office to call me, set
up an appointment and go see them.
This was probably probably March, I believe or
April.
I think it was April. I actually got
tested and then May when they told me.
So I I waited a couple of weeks.
They call me, and I I get in,
I get an appointment scheduled and I go
to the genetic specialist in Kaiser.
And we sit down and we talk, and
he tells me,
and he explains to me again on what
it is. He he didn't actually tell me
that, like, the medical terms and the medical
names and the references of what it was
he was testing me for.
He just said there was vascular
diseases that a couple of them that he
wanted me to test for.
That might be an issue. That might be
the cause of this, without getting into too
much detail
you know, he mentioned that
because I I looked out... I was so
healthy. I looked healthy previously that I didn't
show signs of
or symptoms of of of that genetic disease.
But, you know, it's it's funny. I look
at it now, and I think you and
I had this conversation before and
And when you had sent it mentioned skin
breaking, I I think back now and I
was like, you know when I was said,
and I told you about the bee being
allergic the chalk, the chalk issue when I
was in school.
Well when I reached to touch chalk, I
maybe been in for a second grade, and
we had chalkboard, and we'd ride on the
chalkboard. I'd go home a couple digging get
my skin would break. Yeah. My fingertips, and
my my mom would actually have to put
cream on my hands and gloves.
But
no. There was no knowledge of that.
You know, but that's what used to happen.
So
he goes, I'm gonna test you for it
for some stuff, and we're gonna come back.
And and and I asked him message as,
well, what is... Do you guys test for?
He goes, well we test for a lot
of... They're they're gonna test you for a
lot of stuff. So what's gonna happen is
if you come up and you're alerted for...
A specific gene, it'll show positive. Right? And
I says, okay.
So I got that call a couple of
weeks later, and
Yeah. Yeah It was him.
So he called me in 1 of to
talked about my results. I go into the
office, and he starts telling me that I
was positive
for this
And again, I had no knowledge of it.
You know, I I didn't know what it
was. I didn't know any details about it.
Never heard of it.
So I I just...
I I stood in silence really, I didn't
know how to,
digested. I digest the information.
What did he tell you about it?
You know, he he he was pretty empathetic.
You know, he was it was
he was... He broke the news well. I
mean, I can say,
kept it, you know, as far as
you know, I know this isn't what you
wanna hear. I'm sorry, but, you know, this
is is something that's... It's a vascular issue,
and he started saying, he he told me
a little bit about it. As far as,
you know, it... Basically what it does is
it makes your bay... Your your veins or
arteries
weak, You know, didn't go into much details
about it.
And the name of it. And then he
told me, you know, you need to change
your
lifestyle to accommodate this, and you need to
make sure
you're keeping on top of it.
And I'm like, what do you mean change
my lifestyle. You know, he goes was, like,
you immediately gotta stop the crossfit. You can't
do that anymore. He you can't way live.
And I'm like, you talking about. So, basically,
I I can't live in normal life, and,
you know, he told me this way you've
been living a normal life.
But
you gotta make a few adjustments to as
you're gonna get older. And
at that point, that's, you know, when the
grief... That's when it kinda started sinking in.
You know,
luckily enough my vascular surgeon called me an
after hey got tested it and they found
out.
And she gave me some more details about
about beds and whatnot and about what it
is and and
you know, what to do and and as
far as
what not to do. But the thing is
I still felt like I knew nothing,
I... I knew absolutely nothing about it. It's
like,
yeah. You're telling me I can't wait left.
Yeah. You're telling me I can't crossfit. You're
telling me. I can't go and jog anymore.
Or I can jog, it has to be
very, very lightly,
and it can be not, you know, no
marathons or anything like that. So you're basically
taking
everything I wanna do, and I can't do
it why?
Why can't I I because my orders are
weak. So what? Okay? What's gonna happen?
You know, I I didn't know the details
about it. I just knew that
that's what... The way it was.
How did that...
What did that feel? Like, how did you
move forward with that? Because... I mean, like
you point out, you had been doing crossfit.
You were active, You were weight lifting.
I mean, even years before when you were
diagnosed with these aneurysms and then had the
stroke or the mini stroke. Like,
You know, at that time, they were just...
It seems like,
okay. You had these things. We're not gonna
look into it,
you know, and mer, you go along. Your
way. And
then this time, it's totally different.
Like, how did you move forward from that?
So
I think the
the the the immediate,
Time period,
I I didn't take it well. It was
more of 1 of those things of...
I didn't take it as serious as I
should have.
I I just was like,
okay. You know, maybe I won't do the
cross here, but I also still do things
and, like, it's not a big deal. I've
lived this long and I'm healthy.
And
that's not the case
at all, you know, because what happened while
I did that,
you know, I I wound up in the
hospital again.
I think in January or what it was.
I think it was January.
I went up in the hospital, and
that doctor was like,
and it was in... I was in visiting
in Mexico at the time, so I wound
up in the hospital in Mexico even.
And that same day because I was throwing
a blood. They did a...
Cat scan on my stomach. I had told
the doctor. Well, I didn't tell the doctor
I told the nurse, but when they took
my rays, he came back in and he
goes, you got he they immediately knew. They
didn't even... It didn't take them weeks or
anything. That doctor. That doctor was older. So
he had much more experience.
And because he was a lot older. So
I'm sure he's seen a lot more than
some of the doctors Was working with here.
And from it from the sounds of it.
He had been exposed to a lot more
and worked in a lot of other areas
in the world.
So... But he immediately knew. I mean, he
told me he goes you have a vast
disease, and he was in it's very rare,
and I go, yeah. Got it.
And he was you shouldn't be cute He
started like you should not be drinking. She
should not be partying, she should not be
doing not eating he was don't chili. You
know, he goes, what's wrong with you and
I go, be Well, I I just found
out last year and he goes not. And
and so he explained to me. So I
wound up in the hospital for Hiatus hiatus
hernia. Hiatus Hernia. So I had a hernia
on my stomach. And it's funny. I mission
that, and
I met a nurse later,
so that had told me that is was
common amongst individual events, and I was like,
oh, wow. III would've have never even known
that. So that's why how I... I wound
the pen hospital Mexico and
What happened was son I had the hernia
and I threw up the blood, he had
explained to me. He was... Your your lighter
your blood vessels burst. You had all those...
There... Then those are aneurysms. Right? He said
they just burst it. That's what happened.
So that makes sense.
So at that time, I I start taking
stuff serious and I said says, okay. So
I I came back from vacation, and I
buckled down, and I started going into the
doctor and let him know I have the
hernia and,
you know, we started
just focusing on me and just keeping up
with my vascular surgeon, and my vascular surgeon.
When I had told her about it, she
goes,
I'm gonna put you on a plan every
year, we're gonna do full body scans once
a year for you. So I did that
this year and I think March. What it
was so Doing around February, March,
and she will be doing that from this
time forward. Right?
So that's where I'm at.
Yeah. Did you need any surgery on any
of your aneurysms
before or have they remained stable? Like, where
are your aneurysms and...
And what is being done about? I guess
is a real question?
So all my aneurysms are in my pe
area,
right now, my my Lil, which is my
left 5.
Growing area
is actually very large that we're already in
talks of surgery on on,
mitigating that, whatever it is. They're they're gonna
proceed with. I am talking to doctor S.
We I actually just sent over my
police forms and stuff so they could are
signed on my form so they could pull
my medical records and and work that out
for an initial intake type of interview, so
we could see about surgery and stuff like
that. But they're telling me that it's growing
at a maybe a centimeter a year,
and I had the talks of that with
my vascular specialist.
So
with that, with the last, not this
x ray round, but the previous to last
year,
during the diagnosis
round of x rays, she had caught that
and said it was pretty large. So she
wanted me to go talk to talk to
their vascular Kaiser
surgical vascular specialist. She's a surgeon too, but
she said she didn't feel comfortable taking that
type of
project on. So she wanted me to go
talk to someone that was more seasoned. Another
doctor and maybe more exposure and experience with
it.
So I went to down, which is an
La Kaiser
in West La. And I guess that's their
specialty cases for Kaiser.
And I spoke with him. He took my
x rays and
he said, you know, the same thing. It's
that it's about a 3.6 centimeter meter. He
goes for your size. He goes... This is
the time we need to talk about surgery
and repairing it.
But,
you know,
unfortunately,
after talking with their group, and he
their specialty their team, they felt uncomfortable to
do the procedure.
So
before that, this is, I
I had already been working with with the
Mar Foundation, and I had already reached out
to them and
and got in touch with the Mar Foundation
in Jan and
Janet is the 1 that... That gave me
all the resources and contacts for vets knowledge.
And what whatever knowledge they have. Right?
And context, which as much as what what
they could. And she's actually the first person
that kind of
gave me some type some knowledge and some
reassurance, you know, that, you know,
being proactive and and keeping on top of
everything, you know, you can still live life
and
it can be enjoyable.
There are times and may be a little
rough than normal. And
and she's like, you know, you're not gonna
die tomorrow, which I appreciate it. It kind
of...
It it really gave me a lot of
relief. She was the first 1. So I
had already been talking to the whole hospital
And I met with their... In the vascular
department, and I met with all of them,
all the whole department is by far.
I will never forget the department and they're
the greatest, everyone in there. So I appreciate
him. So I met with doctor Lia
and everybody, all the nurses in.
That well doctor. Danes is the 1 that
that mentioned when I had told him about
Eli,
or my il artery and the surgery.
And I had... And he... He's the 1
that told me a lot of people... A
lot of doctors are probably gonna feel reluctant
about working on you. He was... But we
do have a surgeon that actually has a
lot of exposure
and
it's seasoned as far as working on doing
these type of procedures with...
Individuals with vascular diseases.
And he goes, she's great,
and she has, and she's done Il lax
surgeries before if that's the case. And I
says, yeah. So we started talking about that.
So this was beef prior to the meeting
with him, the
the surgeon in Kaiser in West La. Got
it. The So
I had
mentioned to him after he said that I
says, well,
I know of
another vascular
surgeon.
I don't always say place. But hospital that
they're willing to to work I mean, they
got knowledge at this.
It's called Whole hospital and
they've already... I've already spoke with them, and
they said they would, you know, take on
anything that I need. And he was, you
know, he was
understanding. He was very understand very acceptance.
You know, he had asked me the doctor's
name, and he goes I'll get your referral
over there. He goes, that's great to hear.
He goes, yeah. If they have... If they
have experience with this, and they're willing to
do it. In He goes and they know,
you know, they they can have an... Success
with it. That's great. And I said, yeah,
He goes maybe, you know, they can talk
with us and we can learn from them.
So I gave him the the doctor's name,
and he actually did sent the referral over
right away, which I appreciated.
And so
we hadn't actually moved forward with any of
that yet. We kinda just had an initial
consultation.
I met doctor S at...
The s Mar symposium.
I think that's what it's called, But is
the symposium in Oregon.
We
met and it was just brief during the
dinner. We didn't get to talk, but, you
know,
she had said to send all the information
over, and she would take a look at
it,
And
so I'm just now getting around to it.
So this is where I'm at now. Yeah.
As far as that's the only surgery.
That I'm I'm looking at you presently,
not to say there won't be ending in
the future,
because, you know,
at this time, I'm living with a lot
of aneurysms. I think... I think they had
said 1 2 every organ, but
there...
Not critical. I wanna say. They're just something
to look at and then pay attention to
in the background. Mh.
I always just wanna take a moment to...
Shout out
pretty much everybody that you just mentioned
between doctor S,
doctor and Lia yang,
meg over
and doctor Lia office. She's been on the
podcast before and works with him and has
vets herself, you know,
and
all those people
are amazing
and jan lynch,
Jan, if you're listening to this podcast, you've
done an incredible job
connecting
people and giving them information and
you know, making people feel
A little more stable, I think is what
I heard. Right? Carla just a little more,
like,
Okay.
Take a deep breath. Like,
we're gonna move on from this. We're gonna
figure out how to
how to make it work?
For sure. Definitely a breath of fresh air
for sure. Yeah. Jan amazing.
All of y'all are amazing. Shout out to
All of y'all. I'm so glad that you
were connected with Jan and then
with David Lia, and then S Cha, like,
they're all amazing people.
You know, so I met you at that
conference
in Portland, the Symposium in Portland,
What did it feel like meeting at their
people with ads?
Bitter sweet. Right? You you don't want anybody.
To have this,
obviously,
this is not fun.
But to know that you're not alone
and that people
have an understanding of,
you know, how you feel physically and emotionally.
I think the emotional is probably the more
important.
But you know, It's it's hard to for
people to understand, you know, that don't have
this. I'm I'm not saying that other the
people don't have other issues, but if they
don't, and they don't have this,
hard for people to understand the small aches
and pains that you live through... That you
think is normal,
and it's not you know, I didn't realize
that me
having sharp pains
in my stomach or in my side area
or my back. I just thought it was
normal. I just... I've always shut up and
not complained about it. You know, I just
living with the pains
is normal, and it's not, you know,
Like I said, it's bitter sweet and
it was great to meet everybody. I just...
Everybody is just so welcoming.
And I like to think that a lot
of people... A lot of us that do
have it. The reason why is because we
know there's a lack of knowledge.
And we know how tough mentally, it can
be if if you don't know what's going
on.
And you don't understand it.
I think
that's
the bigger issue.
Right, for an individual. Yeah.
For sure. And I think, just wanna make
sure that we... You know, that after you
were diagnosed, like,
when we talked before, you said it changes
a way that you thought of yourself.
Like it changed, like, you had thought you
were
healthy, like, do you wanna expand on that?
Feeling after the diagnosis?
Well,
the only thing I could say is that
there was this brief time period.
When I thought
that I wouldn't be able to do any.
I I thought I building. I was just
broken as a person. Like, my body just
physically, like, I'm I'm no good. I'm I'm
broken now. Like, what am I gonna do?
You know, what what can I do?
And
that is... That's tough for someone to take
on.
You know.
And the messed the thing is people that
have temporary injuries. I'm sure they go through
2 for a short period, but it'll heal
and you'll be alright. For us, it's a
little more tough
because we know that
as of right now, there's there's no healing
There's only keeping...
There's only preventive maintenance. Right? There's just keeping
an eye on it and trying to stay
healthy and fight as you can.
I it's a good way to put it.
We have a lot of research to do
to find a treatment.
That will prevent us from having to deal
with these kinds of things.
You know, So you so you were diagnosed
with us, and then
know, you're doing... You're going through all of
this monitoring and figuring out the surgery on
this Il and when is that gonna happen
and how... You who is that gonna be
with and all that. And taking in, like,
all of this information, I think it's been
about a year, a little more than a
year, maybe since your diagnosis. Right? Yeah. Yeah.
So
just like rapid change of
before and after. And then you go to
the symposium and you're meeting people and you're
hearing about research? And I'm...
Guess, like, what are what are your takeaways
from
Where we are right now and where
we should be.
Well,
obviously, we're still at the starting line. Trust.
As far as
having, you know, a lot of accurate data
and
put in 1 place, you know, for us
to understand and and at and accuracy,
you know,
and also to be on the same page,
I know this symposium, they had mentioned that
there's clinical preach, clinical trials that are going
on in Europe,
are not even in Europe. They're actually past
clinical trials and they're already having treatments that
they say are effective. We don't have the
data, and we don't have the understanding here
because we don't
We are not a part of those clinical
trials, but
it was 1 that... There was 1 that
was started before
Covid. I know that it stopped.
But it has started up again. And when
we went to the symposium, they had mentioned
that it stopped, and it hadn't... They had
knowledge of it. They didn't have knowledge it
started up again. But I had actually just
received an email a week prior to the
symposium
about
if I was
interested in in being a part of it
because they were starting it up already again.
So I'm moving forward with that,
and it's the clinical trial for
I'm not sure if you know, the name
it. I don't know the name. That's the
1 for so all.
Liberal. That's what it is. So
we're gonna... I'm gonna... I'm definitely keeping in
contact with them. I'm moving forward with that
to see how that works and if I'm
actually gonna get started. I know I've already
been approved. Or waiting on my medical records,
and I hope, you know, you would look
into that maybe consider it and and look
into that yourself and all of us, You
know, if it's something that if some or
1 of us are willing to do or
wanna do, definitely, it's good... You know, something
to look into.
I also looked into stem cells,
with stem cells being,
I wanna say,
there's
almost
no data on it
that's actually public or very little data.
There is data that, you know, different universities
have publications for it. You can research that
it does help a lot of
autoimmune diseases and and repair organs and joints,
but it's not a cure, right, for us.
But
as far as for me, the research I
was looking into was any... Some type, something
that would make me feel comfortable
and help me prolong
or for go any issues that I would
have till I'm older. Right? We wanna live
that long and and good quality of life.
That's our goal. Right? That's everybody's goal. You
wanna live to be old in its best
quality of life as you can have.
So with stem cells,
I was looking to that also, and what
I found was
I talked to a couple different
agencies
that that do offer it... Got offer the
treatment even here in the Us here in
in Mexico.
And, you know, their belief, which... There's not...
Again, there's not enough data gathered around for
any of this to be true,
to be set in stone that is true,
but you know, there is data, and it
has been compiled, and some of it has
been proven
just for real life
experience, right, in real life
cases.
You know, where
it there a repair, you know, your pancreas
your repairs, you know, people will do this
Iv treatments and some of your organs will
just be will be well again for... I
don't know if it's temporary or permanent, but
I know it happens.
And also, they believe that it
what it does is because when... If you...
And, again, you have to have it... They
do it in different,
I wanna say different ways of giving you
the treatment, whether it injection or whether it's
Iv.
So
their belief is if they give an Iv
treatment that the stem cells and the ex
xo will
flow through the body and even the egg
zones as tiny They will go ahead and
and get into different areas of
your
arteries and
are the needed areas of your arteries and
veins
and blood vessels and repair the
the weakened
walls, basically kind of
hold up the structure like a barrier and
and strengthen that. Right?
Again,
I don't know whether it's temporary or permanent,
most likely, it's temporary,
But if it's something that can help,
temporarily, I'm off for it. Right? Because I
go through the pain, and I know what
it is.
Yeah. That is so interesting. That's like,
I haven't really heard of that being used
in vascular Eds and I'm...
Interested to read more about it. So,
I will, for our listeners, I'll dig up
what I can find
and put it in the show notes
so that, you know, you could check it
out if you want to.
That's so interesting. And, you know, I think
overall,
research just... We have so much more to
do
than where we are right now.
What? For sure. Yeah.
Were there signs... Like you mentioned earlier the
skin tearing from the chalk when you were
a kid, were there other signs growing up?
That you now know are associated with vets
that you had? Well, I'm not necessarily
because III
guess I... It was the lack of knowledge
of what to look for. I I can
tell. They're probably were. I just don't remember.
The 1 thing I do remember is about
my skin breaking because
It was often,
and it it lasted, you know, until I
was almost the teenager, and it didn't stop.
I don't know why it stopped when I
was a teenager, but it did...
And,
you know, well, also, I I learned to
stay away from chalk and try things too.
Right? And, like, whatever dried my skin up,
I learned to stay away from. But I
I just... I can tell you. There's certain
things that I noticed now now that I've
I've been around all of... I've been around
of individuals, other individuals with it, that we
have common...
We have things that are in common, maybe,
like, like my smaller mouth.
I I always thought that was normal because
of my dad, but, you know you're look
at my brother and my sister, they don't.
We do look alike like the upper face,
but not the bottom. Right?
And they were talking about this symposium about
mouth shape and the top in the butt
and the top arch or whatever. And I
noticed that's common between us.
Some of us have that,
facial facial feature facial features.
They're just slight, but if you really, really
notice my, that they're there.
But other than that growing up, no. You
know, I I just I couldn't tell you
because I I didn't know... I wouldn't I
know what to look for at that time.
And it's so far back. I I don't
remember it. Yeah.
Do you have any advice for someone going
through? Either what's... You're going through now or
something that you've been through related to your
med diagnosis?
Yes. Pay attention to your health.
Pay attention to the littlest thing. It doesn't
matter what it is.
If you're young,
you can probably get away with it, but
as you get older,
if you feel something's not right,
it doesn't matter if you
feel like it's a waste of time or
if you don't believe it,
get check, get a checkup up, you know,
make sure...
And then doctors are people too, even though
I've met some that are some of the
most brilliant people that I've ever met in
my life,
to be human is to error. Right? You
know, they you you gotta... You also... If
you feel like something right, speak up. Let
him know, hey, Maybe you should look into
more... Into that more for me, please, because
I don't understand it, and I don't know
what it is. And if you say it's
there, and it's... And you don't know if
it's sears, or not, maybe it is serious
so we need to look into it. Speak
up.
Also, if
you do have it and you don't know
where to look or don't know who to
talk to Marvin Foundation. Please call them,
get in touch with the resources, reach out
to your local
resource hospital.
I'm sure they have a a Facebook page.
I'm sure they have a group that they
get together and they hang out, you know,
like like us. We have a group chat.
Like, we've talked we've met. I'm sure they
have that that way, you don't feel alone
and that way, you can also gain some
more knowledge.
And accurate knowledge because of what out there...
What's out there on the Internet
is really old data.
There's very little that's updated. I should say
most of it is old data. So what
you're gonna find
may not be as accurate as as what
what it is it... What it is now.
And it may not be as scary,
it may enlighten you and and
put a positive spin on on this and
in your life.
That's great advice. I'll put
Also, I'll put links in the episode show
notes for the foundation and the support groups
and things like that too. That's wonderful advice.
For the medical professionals listening or the medical
students listening.
Is there anything about your experience living with
ads or
just in general about
ads that you want them to know?
I'm not I'm not sure. I have the
I'm not sure I I have the capacity
or or the expert the knowledge to even
give them an advice or tell them, you
know, Yeah. What it could... What could they
do or what couldn't they do better?
You know, I think
what they're limited to.
They are doing what they can. You know,
I I know we we have those
those 3 regions that are working
hard, I I guess. Right,
as far as to find out information and
and
pull stuff together. Right? I I think it's
Oregon State University,
John Hopkins and
in Texas, I believe too. Yeah. To my
understanding. Yeah. Baylor and
I get the Ut and Baylor are the
same
thing, and there's also the university of Washington.
But yeah. Those are the... I think those
are probably the main regions or some
doctors over at in New York that are
pretty familiar. There's mayo clinic in
Rochester.
There's a lot of different
hospitals now where we have people who are
knowledgeable
about vets and Mar and Illinois states,
But I think the major research is
as you mentioned coming from, like, 3 or
4 areas plus
Europe.
Yeah.
I guess the only question I have is
with all the updated technology and I'm an
It
with Ai,
Like, where are we at with that? Know,
and and implementing that in a strategy using
Ai and
and
helping as far as speed up, you process
speed up, gathering the data speed up, the
quest... The answers to the questions that
and the solutions that we have, you know,
where are we with integrating that technology. And
I actually asked that the symposium. I asked
1 of the doctors,
and, you know,
she had laughed yeah. That's the hot topic
right now.
She goes, but, you know, we're... We... We...
We don't get and we haven't, but it's
being talked about. And I'm like, why are
we talking about this because I know there's
other,
I wanna say issues it is being used
for in the medical field because it is
being used in the medical field. Right? I
mean, it has to be. I don't have
that type of
exposure to it to know for sure for
certain, but I know it has to be
with all the new stuff they talk about
as far as
how they've sped up
with Covid treatments,
with other treatments, they've gone down from 10
years to 3 to 5 years
from finding answers to solutions and even speeding
up
pro progress with speeding up
approvals. Right? So
why is that not being used for rare
genetic diseases?
And this
itself that's I guess, I I have that
question.
So I guess that's the only thing I
I would ask are our health professionals
is where are we with that? And how
can we
how can we help? Or how can we...
Implement that to help speed stuff speed up
these answers to these solutions.
Yeah. I think that's a great
that's a great thought to kinda leave with
the medical professionals listening and the medical students
and the researchers listening.
I think it's a great thought. You know,
both,
you know, why aren't we doing this?
How do we do this? Is this applicable?
To our research and beds and
how as,
you know, someone with vets,
like, how can someone with vets help this
process, help this research, help make sure that
progress is moving forward. Right? I think those
are great thoughts
to leave
the medical professionals and researchers with
good thoughts.
Well, thank you so much for coming on
and sharing your story.
Especially so soon after diagnosis, you know, I
know it's been about a year, but in
the grand scheme of things, like, I know,
a year is not very long to be
living with this knowledge
about beds and, you know, figuring it all
out out and meeting people for the first
time doing everything that you're doing now.
They can be overwhelming. And I really, really
appreciate you coming on to share your story
out Well, Thank you. I mean, I appreciate
you allowing Me, be on here and and
tell it. I'm glad I could I could
do this. I I never would've have thought
even thought about it or even had the
courage.
And for you to invite me and
and kinda hold my hand through the entire
process and to do this.
It's really cool. I appreciate it.
Yeah. Of course. If you're listening in you're
newly diagnosed and you're
trying to find resources, As I said, there's
gonna be lots resources down in the bottom.
But thanks again, Carlos, and I'll be wishing
the best for you for your
upcoming
to be determined date of your Il.
Procedure and all of that.
For sure.
Thank you.
Thanks for listening to this episode featuring Carlos
Horn, sharing his story with vets. If you're
ready to meet others, get involved or need
support, there are links for you in the
episode show notes, as well as information on
how to sign up for the Fed's collaborative.
A research study for people with beds, mar,
and lo Dee.
If you like this show, be sure to
share it on social media or even better,
give it a rating or review. You can
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always, my top tier patrons are listed in
the episode show notes. If you wanna be
on the next season of the show, there's
a link in the episode show notes to
get on the pre interview calendar, and I'll
be starting the interview process for next season
in September. In the next episode, we'll be
talking to Aaron Lang about her story with
a Us. See you soon.
We