Kristen Hagopian Show - 08 20 25

Episode Transcript

Speaker 1 (00:07):
And we are back with the Christian Egopian Show. And
you guys know how much I love our medical segments.
It never ceases to amaze me the leaps and bounds
we make with the science and with the breakthroughs. It's
always so uplifting. In a world full of crazy news headlines,
a subject matter that is of importance to so many

(00:29):
of us, and that is the fact that breast cancer
is the most common cancer in women in the US.
I think we all are pretty much aware of that,
and it's the hur too positive breast cancer which accounts
for nearly twenty percent of all those diagnoses. A lot
of people may be aware of that as well. But
there's so much new information, so much new science going on,

(00:52):
and I'm delighted to have joining us VIR Newsmaker Line
doctor Rheaz, medical oncologist at the Oklahoma University Health even
Some Cancer Center, joining is VR Newsmaker Line to break
down all of the latest new headlines and tell us
what's out there these days.

Speaker 2 (01:07):
Doctor welcome, Thank you very much, very glad to be
here on behalf of gen and Tech to talk about
breast cancer and create some awareness.

Speaker 1 (01:15):
Well, God blessed genet Tech and all of your hard
work with this too, because and I know I'm preaching
to the choir here, but any kind of a diagnosis,
whether it's COVID or whether it's a broken arm or
whatever it is, it's jarring and it's very very traumatic,
I think is actually the word for it, especially when
it's a cancer diagnosis. And speaking from the lady's side

(01:38):
of the aisle, when you hear breast cancer, you just
kind of freeze in your tracks. Whether it's someone in
your family tree or a friend, it's just a go
to move. And with all of the latest amazing breakthroughs
and treatments out there that are light years ahead of
what we knew even ten years ago, it can be
so reassuring to hear from doctors like yourself who are

(02:00):
right there on the front lines telling this all of
the new ways that we can battle this. Tell us
a little bit about the current treatment options that you're
recommending these days.

Speaker 2 (02:09):
So you know, like you said, you know, breast cancer
is very common. It is the most common cancer in
the United States. Over two hundred and fifty thousand new
cases of breast cancer each year are diagnosed in the
United States, and her two positive cancer which is about
twenty percent of all cases, is very common. These are

(02:30):
typically the aggressive kind of breast cancers. However, in the
last few years, we have made huge progress against these
cancers and the outcomes have changed dramatically in the last
few years. When we look at any new case of
breast cancer, we like to know the detail of the
cancer because each women breast cancer may be very different

(02:52):
from the other patient. So knowing a detail about the
hormone receptor status and her two receptor status is where
important because a lot depends on this information as to
which medicines we're going to be using, how we're going
to sequence all our treatments that include surgery, radiation, chemotherapies,

(03:12):
targeted therapies, So a lot depend on this information as
to how we're going to come up with a treatment
plan for each patient. So when we are looking at
a new case of breast cancer, we are reviewing all
this information with the patient and then we sit with
the patient and then we talk about all the treatment
options because most of these treatments involve giving them multiple medicines.

(03:35):
Those medicines include chemotherapies and targeted therapies. Historically, these medicines
were very hard to do. There were a lot of
side effects that people will go through. This was a
very time consuming process, sometimes take more than half a
day to administer these medicines, so it was really hard
for patients to go through these treatments. However, lately we

(03:55):
are coming up with newer treatment options that you can
effectively give to the patient at a very short span
of time with a relatively better side effect profile. So
the treatments are slowly getting better and better and it
is not as burdensome on the patient as it used
to be. So one such example of such improvement in

(04:17):
treatment is a medicine named Fesco, which is a subcutaneous injection,
and just to put things in perspective, Fesco is a
combination of two medicines that now we administer over five
to ten minutes. However, a few years back, you know,
we had to use the same to Madison over two
to three hours. So this saves a lot of time

(04:38):
to the patient. It is very convenient to do through
a subcutaneous injection compared to a long IV infusion. Takes
very little time to administer and people can go on
with their day with work and everything. So I have
a lot of patients who come from their work get
a five to ten minute injection at our cancer center
and go back to work and keep on going every day,

(05:00):
even though there are some side effects to consider, but
overall it requires very little time commitment on the part
of the patient.

Speaker 1 (05:08):
That is brilliant. And I'm taking notes as we're talking
here because you're bringing up so many good points. But
one of the things that really made me sit up
in my chair just now is that difference in the treatment.
You know, we all picture these types of treatments, is
you know, long, all day, you're sitting in a chair
feeling you know, not great, obviously you've got a needle

(05:29):
in your arm all day, when in fact, I think
very few people are aware of this new treatment method
which is just as effective as if you know, if
not more, hopefully, and it's the mental lift of just
kind of feeling more like in your everyday, regular routine
and not in a hospital all day. No offense to hospitals,
they are stuffed with some of the brightest people I've
ever known, but when you're there, it's very intimidating and

(05:51):
it can be very wearing on your spirit, thinking, you know,
I'm here for this tough treatment when you're at home
or able to do it somewhere else where you're more
relaxed and comfortable. Have to think that that lends itself
well to the healing process as well. And one other
thing that you talked about, it's this great one two punch.
It's not only these amazing treatment upgrades and how effective

(06:13):
they are, but talk to us about, you know, your
approach maybe with recommending different types of lifestyle changes, and
you know, talk to me about a great way that
you can the downside of these treatments and maybe even
increase the effectiveness of these treatments through lifestyle. What do
you recommend so.

Speaker 2 (06:31):
You know that you know, when we sit with the patients,
we want to learn as much as possible about the patient.
You know, what is their day to day life looks like.
You know, we have a lot of patients who are working,
so they always are looking to stay at work as
much as possible and take very little time off because
in between other cancer treatments like surgeries and stuff, they

(06:51):
already have a lot of they have taken a lot
of time off, so their goal is continue with their
work and other life commitments. As much as possible, So
we discuss this with patients. We ask them about their priorities,
we ask them about their other medical problems and other
commoderate conditions before we come up with a treatment plan
for these patients. And our goal is always to make

(07:13):
the treatment as easy as possible. And like you said that,
you know, with these newer treatments, people do not have
to come and stay for hours with an IV in
their arm, and it is very convenient and then you know,
go back to their work or their home. That alone
improves the quality of life a lot. It has a
huge psychological impact for them. There is very little interruption

(07:37):
in their day to day life and people just love
it and the outcomes are as good as the other
treatments they have to take over several hours. So in short,
we are able to help a lot of people to
maintain a good quality of life at the same time
continue their cancer treatments without any compromise on their outcome.

(08:00):
In terms of your other question about like what lifestyle
changes we recommend, so, you know, especially speaking from a
breast cancer standpoint, obviously, staying close to your ideal body
weight is very important, so we like people to be
staying active with healthy eating, exercise. These are very important
things that have to continue along with their medical management

(08:23):
for their cancer. And these little things and little lifestyle
changes go a long way in improving the outcomes of
these patients. So staying lean as close to your ideal
body weight is very much preferred. Daily exercise, eating healthy
low card diet. We give all these instructions to our
patients and review these time to time with our patients.

(08:45):
These little things they can do in their life to
improve their outcomes.

Speaker 1 (08:49):
Brilliant doctor Rheas, I knew the time would fly. Where
do our listeners coast to coast go to find out
more about this? I'm sure they're going to want to
educate themselves even more.

Speaker 2 (08:57):
Yeah, you know so, One thing I tell all my
patients is that they want to educate themselves as much
as possible because knowledge is power, and the patients who
educate themselves well generally do better in terms of going
through the cancer treatment, coping with the side effects, and
improving their outcomes. So now there are a lot of

(09:18):
resources online. One such great resources www dot festco dot
com and especially for her to positive breast cancer cases,
they can go to this website and learn a lot
about different treatment options, the side effects of the treatment.
How conveniently these treatments can be given, how it will

(09:39):
impact their lifestyle, and how it can facilitate their lifestyle.
They can also learn about side effects of the treatment.
Because you know, we are not quite there yet where
the treatments are very benign and have no side effects.
These treatments still have side effects like feeling weak, tired.

(09:59):
Sometimes long term use of these treatments can cause issues
with the heart or lungs.

Speaker 3 (10:04):
So it is very.

Speaker 2 (10:04):
Important to educate yourself about the potential side effects so
that if you see something it's coming, that information is
at the back of your mind so you can interpret
your symptoms and notify your doctor so that they can
take a proper detection in time and mitigate those side effects.

Speaker 1 (10:21):
Brilliant, This is fantastic. This is so appreciated, doctor Rheaz.
I knew the time would fly. Thank you so much
for taking time out of your busy schedule. You've got
an open mic anytime, please joins again and you can.

Speaker 2 (10:32):
Thank you very much thanks for having us.

Speaker 1 (10:33):
You've been movie right back right after this.

Speaker 4 (10:40):
To the best of all circumstance.

Speaker 1 (11:08):
And we are back with the Christin Negokin Show, and
I've been looking so forward to our next guest. If
there's one thing my husband and I love to watch
on TV, it's stuff that's educational and inspiring and informative
and uplifting and you know, real life drama. And when
you throw a business edge into it, Victor and I

(11:30):
are completely hooked. And nothing puts a cherry on top
of that combo like Shark Tank. Don't deny it, you
watch it too, and imagine my delight at the opportunity
to connect with Victor's in my favorite shark of all,
Barbara Corcoran joining us be our newsmaker line from a
very busy day Barbara, Welcome to the show.

Speaker 5 (11:49):
My pleasure. But I think you say that to all
the sharks, don't you.

Speaker 1 (11:52):
I don't. I don't we love them all? I mean
they You guys make a fantastic combo. It is always
fun and fresh and dynamic to watch you all interact.
It's just motivating. You know, you got so many shows
out there that just you walk away from it feeling
kind of down and why did I just do that?

Speaker 5 (12:08):
Yes, that's true, Shark Tank.

Speaker 1 (12:10):
You walk away smarter, You feel a little sharper, You
feel like you got a bit more of an edge
and your intuition and your business moves on Shark Tank
are honest to god conversation topics for Victor and I
on a regular basis. Your personal background story resonates very
strongly with my husband and we just love hearing your

(12:30):
advice on the show. And in this day and age,
you got to hear this a lot, you know, when
there's so many moving parts to business news stories, you know,
so many conflicting bits of well intended advice out there.
Who better than you to cut through the fluff and
give us some straight info?

Speaker 5 (12:47):
Ohks much.

Speaker 1 (12:47):
And we've got about two hundred stations coast to coast
and all of them pretty much melted my social media
when I bragged about having you on. You know better
than most.

Speaker 5 (12:57):
You're a sweetheart. Christen saying that.

Speaker 1 (12:59):
Small business is are the growth driver of the US economy.
We're all pretty aware of that. Here's the downside that
a lot of people forget. You know, one in four
small businesses say they are one mishap disaster away from
shutting down. That's scary talk right there. For better or
for worse, what are you seeing the trending opportunities that
you're seeing on the streets right now? Break it down

(13:19):
for us.

Speaker 5 (13:20):
Well, I think the very best opportunity out there, which
is a subject of a third seminar in a series
of three, is on AI. And most of the entrepreneurs
out there, where they be a brand new business or
an established business, are definitely afraid of it, like, what's
going to go wrong? I won't be needed anymore, my
product won't be needed? Is stinking thinking all the way.

(13:41):
What AI has done is it has taken the small
business who wasn't able to hire the right help to
do the mundane, endless task of growing a business and
putting it off on AI and getting all the answers
and everything done for them instantly. So that has been
the major trend that has been affecting businesses. With all
the businesses I invested in, I spend more time getting

(14:02):
them to just try it out, to exercise that muscle
and see what they get out of it. And every
business with that exception, has grown their business with new
ideas that they didn't have to generate from the cells.
And yet people don't see AI exactly that way. At all.

Speaker 1 (14:16):
No, it's true, and you have me. You touched on
this briefly. You've got this amazing new webinar series that,
honest to God, anyone who's interested in creating or growing
their business needs to hear more about this. Tell our
listeners a little bit more about that if you would.

Speaker 5 (14:32):
Yes. Of course, it's presented by my business partner at
and T Business. They like entrepreneurs just as much as
I do. In their heart and soul is in the seminars.
So we carefully plot out what are the topics that
I needed and who will listen and who will get
the most out of it. And so we've come up
with three topics for this series. Operational success, customer engagement,

(14:54):
and of course a one which I already mentioned. But
what is important for people to know is these I
make sure it's practical advice, not theoretical advice, but things
that print well or kind of cool to talk about,
but really how you use it directly in your own
business and how you push your business ahead. And that's
why we name the series Unlocking Growth, because we really

(15:15):
believe we do that with these seminar series. This is
not the first one, and we get tremendous feedback from
entrepreneurs small and big as to what they've gotten out
of the series.

Speaker 1 (15:25):
I don't doubt that for a second. And when I
you know, when I put the word out on social
media about having you on, I got so many questions
from listeners. One really stood out for me, and I
think it kind of ties into your subject matter here.
It's here in the Philadelphia area, and he's having a
heck of a time getting a motivated performance out of
a certain segment of employees. You know, they're getting they

(15:47):
have all the latest tech, they've got all the stuff
they need to work with, lots of training, you know,
above average pay, and they're polite enough, there's not a
mean bone in their bodies, but they're just barely phoning
it in performance wise. You know, they think a lot
of tech is going to help with that. But you've
probably heard this story a lot out there, So I
thought i'd pick your brain a bit on that. What
would you recommend for the business owners out there that

(16:07):
would benefit so much from this AI and maybe are
having a tough time if it with their latest employees.
They want to meld the two keep the employees put
them to even better work performance with the AI and
the latest tech. How do you recommend we thread that
needle these days and get our workforce where it needs
to be.

Speaker 5 (16:23):
And what I would suggest on a situation like that,
because I have used it in my own business spending times,
and I've recommended it effectively with the businesses that I've
invested in, is to make sure you offer bonuses for
the tests you actually want to see happen more of.
So it's got to be spontaneous. You've got to orfer
small bonuses. You think people are motivated by that. They

(16:43):
are people are competitive deep inside. And when you offer
a bonus, if you can do this this week, if
you can do this this stay well. The first one
who does this today as brief and immediate as they
can and orfer bonus, you'll get the people focusing on
what they should be be focused on. I remember when
I was my business. I was a low price firm
and I was desperate to make it a high price
firm in real estate, and I tried everything to get

(17:06):
my people to dream, to reach higher, to do more
high price sales, to reach for more high price listings.
Nothing worked until I stood up one day and showed
them a gold horse ribbon that said a million dollars
on it and said, the first guy to get a
million dollar listing or gal that gets it, gets this
gold ribbon. They left me off my seat. However, the
following week, the first kid, a new kid on the

(17:27):
block that I had just joined my firm, went out
and got his first high price listing. And after that,
everybody in the company competed for having a gold ribbon
on front of their desks so that they were a somebody.
And that gold ribbon brought my average sales price to
triple what it was within six months. And it never
would have happened without an incentive. I guess I didn't
have too much money. I didn't even offer ten dollars,

(17:50):
but I gave out those gold ribbons all the time.
You have to drive people with immediate incentives.

Speaker 1 (17:55):
I love that, and I'm frantically scribbling notes in the
march of what I'm typing out here because I love
everything you just said and it's so true. And you
know what else, it's a reminder when you have leaders
like you in the industry, you can kind of talk
people out of their tree just a little bit, you know,
interest rates have been this high before on business loans.

(18:16):
Whatever's going on. We've had these types of debt numbers
and real estate numbers, everything, and you have powered through
it all wiser and stronger. On the other side, it's
a business message that isn't getting out there enough, which
is why we just need to give you a trumpet
and a megaphone and just take it all the way
to eleven. On the volume workshop, webinar of yours must
be getting an unbelievable response. What are you hearing off

(18:39):
the street? From that?

Speaker 5 (18:40):
We get a very good response, particularly after we give one.
So this is a first coming up. But on a
last series of seven hours, it was mind boggling how
sincerely appreciative entrepreneurs were. I went to bed the first, second,
third night, thinking, boy, I did the best good I've
ever done in this world, which I'm sure wasn't true,
but it's just the people are so genuinely appreciated, with

(19:02):
no bolgoney answers on what they could actually do practically
at the office the very next day. People are generally impressed.
Because I have two pieces to this. I know a lot.
I know how to get the entrepreneurs who have done
each item successfully to spill the beings, so to speak.
But also my partner at and T Business knows a
lot and knows how to get people not to waste

(19:23):
money on technology they just don't need, which is the norm,
and just get exactly what they need to grow their business.
And technology is behind gosh. I would say eighty percent
of the business growth today and it can't be overlooked
or be frightened of.

Speaker 1 (19:36):
No one does it better. You've got an open mic anytime.
Thank you so much again for joining us. You're the best.

Speaker 5 (19:40):
Thank you so much. By bye.

Speaker 1 (19:42):
We'll be right back right after this.

Speaker 6 (19:48):
To and we are back with the Christian Mgopian Show.

Speaker 1 (20:05):
And these facts kind of really interested me. This report
really grabbed my attention. June marked the thirteenth straight month
of record warm temperatures across the US, and you know,
we've got about two hundred stations coast to coast, and
a lot of you were chiming in with those same
kind of stats. You know, you're wondering how we can
reduce the cost of cooling and everything else and some

(20:27):
fun outdoor activities without melting into the grass. So this
title really grabbed me, and this heat streak is really
showing not a lot of signs of cooling down here
in the Philadelphia area. We get the once in a
while break in the tempts. And while I am very blessed,
a lot of our listeners coast to coast are very blessed.
There are a lot of people out there with their
lives at risk due to the heat. You know that

(20:49):
they don't have the same access to air conditioning, whatever else,
and extreme heat combined with poor air quality can also
worsen a lot of chronic conditions. People we know and
love and care about are affected by you know, we're
talking asthma, we're talking cardiovascular disease. There's a lot of
things out there, and extreme weather events are becoming increasingly

(21:12):
common and severe. But here's the good news, guys. Most
heat related deaths are preventable with some basic education, some
basic outreach, and some basic intervention. So I was so
delighted to get the opportunity to connect with CVS Health,
specifically doctor dank Neckt, a practicing physician VP Clinical Innovation

(21:32):
Officer for CBS Care Mark. I'm in CVS every week,
so this name and the store brand really caught my eye.
They know what they're doing, and we're going to talk
more about with him about ways that we can mediate
the risk and know what we're looking for and take
care of business. Doctor welcome, Thank you for having me.
It's our pleasure. This report really interested me because you know,

(21:55):
we all look forward to summertime and then suddenly it
really punches us between the eyes. A lot of times
with the sessive heat. We worry about family and friends
nearby that maybe have a few health risks. Dive a
little deeper, if you would, into what we were just
talking about, with the health issues caused or maybe just
exacerbated by excessive heat. Talk to us a bit about

(22:16):
those most vulnerable, how we can take good care of them,
and maybe you know the heat stroke red flags that
a lot of people are simply not familiar with.

Speaker 3 (22:26):
Absolutely, so, I think, first and foremost, we started this
journey at CBA's Health more than a year ago. We
really wanted to understand the impact the environment has a
people's health, and one sort of surprising insight we unearthed
was that heat waves are truly the silent killer. They

(22:46):
kill more people than hurricanes, floods, tornadoes combined each year,
but they're the silent killer because they don't really grab
the headlines that you know you'd see with a category
four or five hurricane. So we's all this as a
big gap, a big gap and care and really an
opportunity for CVS Health to step in and support the
most vulnerable folks on staying safe. Right, and so we

(23:11):
rolled out our Environmental Health Impact Initiative really to be
proactive and personalized and identifying those folks at the highest risk.
So those are folks that are let's say they have
multiple medical calmorbidity's, or have diabetes or congestive heart failure.
They may have social issues that we can support. And
so what we do is we reach out to them
and support them ahead of time before that heat wave

(23:34):
arrives in the community, so they can get ready and
put in place a health action plan.

Speaker 1 (23:38):
I love that, and I'm taking notes as you're talking
because you're bringing up so many good points here, and
when we talk about today's reality with heat, with whatever else,
you'll always get that contingent of well intended listeners, wonderful
people who chime in with the very common sense factor
like Chris. You know, one hundred years ago, we didn't
have air conditioning. One hundred years ago, we didn't have

(24:00):
the same clean water. All these things combined, and it's true,
but also one hundred years ago we weren't blessed with
the more advanced age expectancies and the life expectancies. This
all comes as a double edged sword, and we have
to kind of prepare ourselves with each successive generation. Each
generation has its new challenges, and here's for this. We're

(24:21):
taking care of an ever aging population. And this is
definitely part of the mathematical formula. And when we're talking
about beating the heat, that seems to be our a
number one cause here we really want to find ways
to mediate the heat. We have to deal with the heat.
We're here in the Philadelphia area. I am always jokingly
mocked by our Super Talk Mississippi network, where they are

(24:44):
far tougher than I am. All the stations there they
deal with far greater temperatures. They've got some great ideas
how to do that, but a lot of times it
comes to just taking it down to more easy brass
tacks of beating the heat. Talk to us a bit
with your most what you find to be the most
successful tips for staying safe and cool during heat waves
and helping all the people we care about do the same.

Speaker 2 (25:06):
Yeah.

Speaker 3 (25:07):
Absolutely, So this is how our program works, and then
I'll tell you about how we support these folks. So
at the highest level, what we're doing is we're deploying
advanced analytics and AI with our empathetics supportive registered nurses
who do telephonic ouverage. What we have done is we

(25:28):
pull in weather data and pair it with health and
demographic information of our ETHNA Medicare advantage population. We then
pipe the information to those registered nurses and so our
registered nurses they pick up the phone and they call
those folks who are at the highest risk of a
poor health outcome related to heat. And so what happens

(25:50):
in that conversation is quite personal. It's individualized and may vary,
but fundamentally, we raise awareness that there's a heat wave
coming in the coming days and what is the impact
on health. So, for example, if the patient has congestive
heart failure, that individual is at higher risk of a
poor health outcome because their volume status is so precarious. Right,

(26:12):
that individual may be on medication, So raising awareness that
some of those medications can put people at a higher
risk for heat exhaustion or heat stroke. We also educate
on like signs and symptoms of heat exhaustion or heat stroke. Right,
and then I think putting in place a heat action
plan is so critical, whether it be in Philadelphia, Philadelphia

(26:33):
or Mississippi. Knowing where access to a cool room is,
whether it being a cooling center or just making sure
air conditioners working is paid the patients are able to
pay for it can save a life. Also, I think
what's really important is understanding the connection between some mental
health conditions and high heat. High heat can exacerbate common

(26:58):
chronic conditions like I mentioned earlier heartfail but also anxiety
or other serious mental health issues, so we can connect
those folks to resources in the community. And then finally, Chris,
it's so important to think holistically around health. Perhaps that
individual has a pet. We need to make sure that
pet has access to water and is not being exposed

(27:20):
to high heat during the day. That could also save
that pet's life as well.

Speaker 1 (27:23):
Unbelievable. I love everything you just said from start to finish.
I just started grinning and could not stop grinning because
it's all about being proactive and it seems to be
a muscle that a lot of us don't flex anymore
because we feel like we're so pressed for time. Oh,
if something happens to our car, we'll react. Then if
something happens to the front sidewalk, we'll react. Then we

(27:47):
see the cracks, We're not going to react till something happens.
And whether it's your finances or your car, or child
raising or interacting with loved ones, being proactive has since
time immortal has always paid off. And that's a simple
lesson that we all sometimes really need a big old
reminder on because it works. It works beautifully, and not

(28:08):
only does it not cost us anything to be proactive,
it will often save us huge truckloads of money, time
and sanity doing it in place of reacting, being more
proactive rather than reactive. I knew the time would fly.
Talk to us a little bit about how our listeners
coast to coast can tune into this CVS care mark
where they can find more information. You guys always know

(28:30):
how to get it done, and this is going to
be a huge hit with a lot of your biggest
fans out there.

Speaker 3 (28:35):
Terrific. Thanks Chris. Yeah, you can learn more at cvshealth
dot com. I also like to raise awareness that the
CDC has a great website that provides additional insights and
information around heat health. So I recommend the CDC website
as well.

Speaker 1 (28:50):
We'll put a link on all of our social media
as well. Doc connect. This is fantastic. You've got an
open mic anytime. Please join us again and best of
luck with business initiative, your health a lot of people.

Speaker 2 (29:00):
Thanks so much.

Speaker 1 (29:01):
You bet we'll be right back in right after this.

Speaker 4 (29:08):
She is small and not too steep, the best of all.

Speaker 7 (29:17):
Circumstances cross my hands.

Speaker 4 (29:21):
To be a comet person in a little body sign
b alls. I just gotta learn to recall. I'm that sheep.

(29:45):
You understand, I'm just a cat last person in a
low bogic life. Excuse my shoes.

Speaker 7 (29:54):
They do quaestic the special offer and they goodly th
leaving my trouses. I'm giving your fall, but you steal
the sales, so I should complained.

Speaker 4 (30:09):
It squeezed me so tired, so I can't see no more.
They're a size by. I take thirty more. Come fine,

(30:34):
I'm shopping the would a logos CATSTF. I'm dropping my
stand and so that I can buy more.

Speaker 1 (30:53):
And we are back with the Christian mcgopian show, and
you guys know how much I love medical segments. I
am forever dazzled by the incredible leaps and bounds we've
made in so much with research and treatment on conditions
that you know, even a half a generation ago would
have seemed impossible. And that's why I'm so pleased to

(31:16):
have joining us talking about fragile X syndrome. A lot
of us have heard of it, some of us have
not FXS. It's a rare genetic condition and it's the
most inherited form of developmental and intellectual disability. However, where
it ties into so much of our thinking today is
that may often be misdiagnosed as autism or ADHD, which

(31:40):
is something that a lot of us are so much
more familiar with, or perhaps diagnosed together with those conditions,
which can lead parents you can imagine to years of
frustration without the proper therapy and the treatment options for
their child, and a lot of lost time and unbelievable frustration.
I can only imagine. And to help us learn more

(32:02):
about FXS and this reconnect clinical trial, this is fascinating stuff. Guys.
We are joined by developmental behavioral specialist and pediatrician, Doctor
Carrie Buchanan, and patient advocate and parent of a child
living with fragile X syndrome. Ms. Robin Blackwood. Welcome ladies,
Doctor Buchanan, Robin. We're so pleased to have you here.

Speaker 8 (32:24):
Thank you, glad Away, thank you so much for having us.
We're really excited to be here.

Speaker 1 (32:27):
Well, you guys are terrific and I cannot wait to
get going here. We've got so many questions for you.
First of all, for our listeners out there, most of
us are pretty familiar with ADHD, that sort of thing,
fragile X syndrome not so much. Talk to us a
bit about the just syndrome in general, maybe perhaps what
the symptoms are of it. How is it diagnosed?

Speaker 8 (32:48):
Yes, so, fragile X syndrome is a genetic condition, so
it's actually caused by a change in a gene on
the X chromosome. This change then causes the issues that
we see in this syndrome. So this can be developmental delay,
intellectual disability, frequently speech delay, language difficulties, and behavioral challenges.

Speaker 4 (33:08):
This is where the.

Speaker 8 (33:09):
Diagnostic odyssey is tricky because commonly fragiles causes symptoms like
ADHD and autism, also very commonly anxiety, social anxiety, and
social avoidance, and so overall it can be very difficult
to find this diagnosis, especially if your physician stops at

(33:30):
the autism or ADHD diagnosis, and so it's important to
really look further, especially if your child has intellectual disability
on top of autism and ADHD. The diagnosis of FRAGILEC
syndrome is requires a blood or saliva test because we
actually test the DNA to see if there is this
change in the gene.

Speaker 1 (33:49):
That is fascinating and I'm writing notes down as we're
talking here. This is very interesting. It's a fascinating syndrome, honestly,
and no one would know more about it, I would
suspect than the parent of a child caring for that
beautiful child with FXS. Talk to us a bit robin
about the experience of it, going through this process and
the ripple effects on the entire family. Paint a picture

(34:11):
for that for us, if you would. You've got so
many parents listening coast to coast, and I think a
lot of them would like to hear a little bit
more about that.

Speaker 9 (34:18):
So, yeah, so when my son turned one, he was
not talking. He wasn't trying to say words, he wasn't imitating,
it wasn't clapping, he wasn't doing some of the things
that children do easily or start to do at that age.
And we started to kind of search your answers through
a pediatrician, and we luckily were told about genetic testing

(34:43):
and we had him tested for a FRAGILEC syndrome and
he was diagnosed with it right before he was two.
Took a while to get that diagnosis, and so it
can be really frustrating and confusing, you know, just trying
to figure out how to help your child and why
are they struggling to meet their milestones. And so the
effect of getting the diagnosis was pretty significant. You know,

(35:05):
it's hereditary. So I had the chance of having another
child with fragile acts. So learning soon before we had
another child was a blessing. The early intervention therapies physical therapy,
speech therapy, occupational therapy were so instrumental in him being
able to learn and catch up on some things that

(35:27):
he was really far behind on as an infant. So yeah,
that was kind of our introduction two fragile acts, which
we had never heard of before. Kind of how it's
impacted our family initially.

Speaker 1 (35:39):
Absolutely God blessed and they say, all kids pick their parents,
and I can see why you picked you. It sounds
like you've just taken charge of this and taken no prisoners.
I think it's brilliant. Doctor. Back to you, if I
could talk to us a bit about the clinical trial,
the Reconnect clinical trial underway to find ever better treatments
to address the behavioral symptoms of FXX, if you would.

Speaker 8 (36:02):
Yes, absolutely so. Reconnect is a clinical trial that's currently
enrolling individuals with fragile ACTS between the ages of three
and twenty nine. And so this is an eighteen week
trial that's taking place at multiple centers across the United States.
And then there's also a unique option that's a completely
in home participation. And so if you don't like to travel,

(36:24):
enroll in the trial from the comfort of your own home.
There's a completely in home option. And so again, this
is an eighteen week trial for all individuals with FRAGILEC
syndrome between the ages of three and twenty nine.

Speaker 1 (36:34):
That's fascinating that what kind of a response are you
getting for that? It has to be something that is
coming at you like gangbusters are you finding a huge response.

Speaker 8 (36:42):
Yes, we have a lot of very enthusiastic and excited
families to participate because you know, there really there's not
an FDA approved treatment and so so the clinical trials
are really great opportunities for families to get access to
these medications before we get to that level of the
FDA approval and so because at this point, like I said,

(37:02):
there isn't anything available. So families are really excited and
encouraged by the research that's going on, are really enthusiastic
to enroll their children in these trials to see if
these medications work for them.

Speaker 1 (37:13):
And just going again from a parent's perspective, you've got
a lot of new parents out there. Perhaps they're listening
and saying, oh my goodness, there's more people out there
that are having the same challenge as we are. Where
do you recommend they take their first steps to address
this and get on top of it.

Speaker 9 (37:27):
Well, I think if they talk to their pediatrician, definitely
share their concerns, and maybe they have to share it
several times sometimes to get the attention, but you know,
follow their gut, pay attention to what their child is
doing and not doing developmentally. There's lots of resources online
to see what they should be doing and not doing

(37:47):
at that time type of thing based on their age.
But you know, the Reconnect trial also is a great
opportunity for them to learn more about fragile cs. The
website for that is fragileze Help HLP dot com and
they can learn more about the symptoms of fragile X
for their own concerns if they have any for their child.

(38:09):
And then if they want to participate and they already
have the fragile X diagnosis or they're suspected of having fragilects,
they can get involved in the trial and we can
go to the website for more information.

Speaker 1 (38:19):
Outstanding, I knew the time would fly. Doctor Buchanan, Robin,
thank you so much for taking the time out of
your busy schedules. You have got an open mic anytime,
please join us again and God bless thanks for all
you do.

Speaker 8 (38:30):
Thank you, thank you so much.

Speaker 1 (38:32):
Have a great day, you bet and until next week,
save those pennies, pay with cash and you all escape
ruble out there.

Speaker 4 (38:47):
The best of all