December 17, 2024 • 10 mins
Lori Wise joins Ryan to discuss the importance of family conversations about health during the holidays.
Lori was diagnosed with Fabry disease at age 14 and considers herself fortunate. Many people with this condition suffer for decades before being diagnosed. Lori credits her early diagnosis and ability to manage her symptoms to open conversations with family members about their shared health history. She hopes to inspire other families to have similar conversations.
Lori was diagnosed with Fabry disease at age 14 and considers herself fortunate. Many people with this condition suffer for decades before being diagnosed. Lori credits her early diagnosis and ability to manage her symptoms to open conversations with family members about their shared health history. She hopes to inspire other families to have similar conversations.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Friday's not quite gone yet, but we're gonna get you
(00:02):
there between two and four pm and the Mountain time zone.
If you're listening live, appreciate you tuning in to Ryan
Shielding Live. When I heard Kamala Harris and We've got
I think three other editions of deep thoughts coming from
this conference where she was addressing supporters before the Holidays,
I heard her rhyme fight and bright with light, and
(00:24):
I immediately shot back to Happy Gilmore and the scene
in the bar where Shooter McGavin rhymes himself and then
Happy Gilmore fires back at him. As you just heard
five seven, seven thirty nine. You can join us by
text at any point throughout today's program, with that coming
up a little bit later on kumbe Janayne False Rape Shield,
(00:46):
founder of that organization, to react to the recent news
of the Duke Lacrosse case rape accuser, confessing to making
the entire story up out of whole cloth. Also reflecting
upon the backlash of the hashtag me too movement, I
don't believe all women that almost derailed Brett Cavanaugh his
nomination for Supreme Court of the United States. Basically, his
(01:09):
organization is designed to help protect men against false rape
and sexual assault allegations. Kumbe went through a very similar
experience firsthand, and he'll be joining me live in studio
to start hour number two and then coming up in
about one hour. Cindy Romero, of course, she was basically
chased along with her husband ed from her Aurora apartment complex,
(01:30):
shot the video from the keyhole cam that eventually went nuclear,
not just viral nationally, internationally, landed her a spot on
Doctor Phil. She's appeared with me in studio twice talking
about what she encountered when the Venezuelan gang Trendy Aragua
did take over her apartment complex. And not just one.
(01:51):
She noticed and ed noticed her husband Venezuelan gang presence
in several, maybe up to a dozen other apartment complexes
in Aurora and Low and behold the latest violence erupting
from a housing unit in that city, reportedly attributable to
Trendy Arragua. We'll get Cindy's comments coming up at the
bottom of our number two. Joining us. Now you get
(02:13):
together for the holidays, you might compare family trees. You know,
you might designate somebody that's me and my family as
the family historian. And you go on too ancestry dot
Com and you trace your family trees back and a
lot of that has a purpose. You want to know
if there's anybody in your family tree and your ancestry
that might have specifical tendencies for diseases. And when you
(02:35):
go through that screening process, it can do a lot
in stealing yourself against such diseases and including those that
maybe a little bit off the radar. And that's what
we're talking about with our next guest, Laurie Wise, and
she's looking to raise awareness about Fabrie disease during the holidays.
As you're getting together, this could be a time for
a conversation along those lines. And early detection, as with
(02:57):
the case in many diseases, is critical to surviving into
treating such a disease. Laurie herself diagnosed with favorite disease
at the age of fourteen. Lori Wise joins us on
Ryan Schuling Live. Laurie, Welcome to the show.
Speaker 2 (03:12):
Hi, mister Schilling, Thank you so much for having me.
Speaker 1 (03:14):
Well, appreciate your time very much, and I just want
you to walk listeners through because fabory disease, while it's
also rare, it can happen to just about anybody, and
when you first noticed symptoms and put the pieces of
the puzzle together.
Speaker 2 (03:29):
Yeah, So fabric disease is actually considered a lipid storage disease.
People with fabric are missing key enzyme whose job is
to break down a particular lipid in the body, and
so when that enzyme is not doing its job or
is missing, that same liquid lipid accumulates through the vascular
(03:52):
system and affects the brain, heart, kidneys, and actually all
the organs. So there is no cure for that. There
are working on things, but there is enzyme replacement therapy
that's been out for about just under twenty years, so
that's been a great plus for people with fabric and
(04:16):
has helped immensely. It's easily passed on. It's pretty much
if you have fabty disease, you can pass it on
in fifty to fifty percent of each pregnancy. So once
you diagnose one person in the family, they often come
up with probably a good five that also might.
Speaker 1 (04:38):
Have it, joining us. As we mentioned Lori why she
does suffer from the disease and was diagnosed at age fourteen.
Now you say you consider yourself to be fortunate but
as I look through some of these symptoms, Laurie, it
might be difficult to distinguish it from maybe symptoms of
some other kind of malady, disease, or temporary condition. You
(04:58):
mentioned high fevers, wide range of symptoms that include chronic pain, fatigue,
heat intolerance, hearing loss, progressive organ damage. That's, like I said,
a wide spectrum of symptoms. But what helped narrow it
in your case to fabric disease and how you were
able to identified or how doctors were.
Speaker 2 (05:17):
The reason I do consider myself fortunate is because my mom,
who had fabric and passed it on to my siblings
and myself, she had a great uncle who just happened
to be in the right place at the right time,
near Mayo Clinic, went in with some pretty vague symptoms,
(05:38):
several of which you just mentioned, and they diagnosed him.
So having that background, we just we came to know
who had it and who didn't. In my mom's days,
she just knew that my little brother had fabric. There
weren't They weren't really testing for it then as they
(06:01):
are now, but she had just seen the same symptoms
in her brothers and in her family.
Speaker 1 (06:08):
Laurie when it comes to treatment, what kind of course
of treatment have you endured over these years. Obviously you've
been able to survive it, and that's a tremendous blessing,
But detecting it early, I'm sure is critical to treating
it effectively. So how would you advise people out there
look out for this sort of thing? And as you said,
there is no cure, but it is treatable and they
(06:29):
are working every day. I would imagine on potential cures
for this, where does it go from there? Once diagnosed?
Speaker 2 (06:36):
You're right the reason it's often well, I've been misdiagnosed
till i was almost forty years old. I was treated
for irritabobile, which I don't actually have, migraines, which I
also don't actually have. None of those are due to fabory.
So several medications I've tried over the years have worked
(07:00):
until finally got the correct diagnosis. You know, one of
the more significant symptoms. Even kidney specialists will will recommend
that several of their nurses, if who have kidney patients,
might just ask the simple question, if you're able to sweat?
(07:23):
Most people are able to sweat. Non sweating is actually
a very key thing about fabriy patients and a simple
question can kind of help diagnose somebody early. Otherwise. They're
working on adding it to the newborn screening panel in Colorado.
(07:43):
It's already been included in a couple of states as
of now, and they hope maybe in two to three
years it'll be part of that newborn screening panel because,
as you said, Ryan once earlier, diagnosis is obviously better
for everyone involved.
Speaker 1 (08:02):
Fascinating the medicine and the rate at which you can
accelerate once they find kind of a key to unlock
what causes this disease, and we pray and hope for
that day when a cure does come down the line.
But final word from you, Laurie, as we approach these holidays,
and I wish you a merry Christmas in a happy
New Year. Is where people can go if they're just
hearing about this for the first time, and you know,
(08:24):
they hear a radio interview, it could fly past them
at a high rate of speed. Is there a website
they can check out? Is there a Facebook page, anything
that you would advocate for people to find out more information.
Speaker 2 (08:35):
Yes, there are actually two wonderful websites. One ISP SIG.
It's Fabriary Support and Information Group f FIG. I think
it's f FIG dot org. And then there's also NFDF
National Foundation or Fabric Disease. Both of those have lots
(08:58):
of information people to contact to get help in your area.
You know physicians who are knowledgeable. We're fortunate to have
a children's hospital in our backyard that is very fabri familiar.
They have a metabolic clinic there and see lots of
(09:21):
patients for fabric and also University Hospital the adult genetics
department is also very familiar. So we're, like I said,
fortunate in that regard, and I guess that's all I've
got on that.
Speaker 1 (09:39):
We appreciate that information and your time. And for those
that heard those various outlets you can check out I'm
looking at one of them that's National Fabric Disease Foundation
and it's simply online at Fabridisease dot org, f A
b R y Disease dot orgon and you might be
hearing about symptoms for the first time. If it helps
just one person out there kind of put this all together,
(10:00):
then we will have done our job here. And she
does their job on a daily basis and raising awareness
and especially during this holiday season when you're meeting with
friends and family, and especially your family members, can have
these conversations, do that research and hopefully be able to
nip something like this in the budge. She is Lori Wise. Laurie,
thank you so much for your time today. Have a
wonderful holiday season. We'll talk to you again down the line.
Speaker 2 (10:22):
Thank you, Ryan. Merry Christmas and Happy New Year to you, Joe.
Speaker 1 (10:24):
Thank you indeed, Merry Christmas, Happy New Year. Lori Wise
joining us raising awareness on fabric disease and one more
time that website fabridisease dot org for the National Fabric
Disease Foundation a time out, We're back wrapping up our
number one on this Tuesday edition of Ryan's Sheeling Live.
After this
Friday's not quite gone yet, but we're gonna get you
(00:02):
there between two and four pm and the Mountain time zone.
If you're listening live, appreciate you tuning in to Ryan
Shielding Live. When I heard Kamala Harris and We've got
I think three other editions of deep thoughts coming from
this conference where she was addressing supporters before the Holidays,
I heard her rhyme fight and bright with light, and
(00:24):
I immediately shot back to Happy Gilmore and the scene
in the bar where Shooter McGavin rhymes himself and then
Happy Gilmore fires back at him. As you just heard
five seven, seven thirty nine. You can join us by
text at any point throughout today's program, with that coming
up a little bit later on kumbe Janayne False Rape Shield,
(00:46):
founder of that organization, to react to the recent news
of the Duke Lacrosse case rape accuser, confessing to making
the entire story up out of whole cloth. Also reflecting
upon the backlash of the hashtag me too movement, I
don't believe all women that almost derailed Brett Cavanaugh his
nomination for Supreme Court of the United States. Basically, his
(01:09):
organization is designed to help protect men against false rape
and sexual assault allegations. Kumbe went through a very similar
experience firsthand, and he'll be joining me live in studio
to start hour number two and then coming up in
about one hour. Cindy Romero, of course, she was basically
chased along with her husband ed from her Aurora apartment complex,
(01:30):
shot the video from the keyhole cam that eventually went nuclear,
not just viral nationally, internationally, landed her a spot on
Doctor Phil. She's appeared with me in studio twice talking
about what she encountered when the Venezuelan gang Trendy Aragua
did take over her apartment complex. And not just one.
(01:51):
She noticed and ed noticed her husband Venezuelan gang presence
in several, maybe up to a dozen other apartment complexes
in Aurora and Low and behold the latest violence erupting
from a housing unit in that city, reportedly attributable to
Trendy Arragua. We'll get Cindy's comments coming up at the
bottom of our number two. Joining us. Now you get
(02:13):
together for the holidays, you might compare family trees. You know,
you might designate somebody that's me and my family as
the family historian. And you go on too ancestry dot
Com and you trace your family trees back and a
lot of that has a purpose. You want to know
if there's anybody in your family tree and your ancestry
that might have specifical tendencies for diseases. And when you
(02:35):
go through that screening process, it can do a lot
in stealing yourself against such diseases and including those that
maybe a little bit off the radar. And that's what
we're talking about with our next guest, Laurie Wise, and
she's looking to raise awareness about Fabrie disease during the holidays.
As you're getting together, this could be a time for
a conversation along those lines. And early detection, as with
(02:57):
the case in many diseases, is critical to surviving into
treating such a disease. Laurie herself diagnosed with favorite disease
at the age of fourteen. Lori Wise joins us on
Ryan Schuling Live. Laurie, Welcome to the show.
Speaker 2 (03:12):
Hi, mister Schilling, Thank you so much for having me.
Speaker 1 (03:14):
Well, appreciate your time very much, and I just want
you to walk listeners through because fabory disease, while it's
also rare, it can happen to just about anybody, and
when you first noticed symptoms and put the pieces of
the puzzle together.
Speaker 2 (03:29):
Yeah, So fabric disease is actually considered a lipid storage disease.
People with fabric are missing key enzyme whose job is
to break down a particular lipid in the body, and
so when that enzyme is not doing its job or
is missing, that same liquid lipid accumulates through the vascular
(03:52):
system and affects the brain, heart, kidneys, and actually all
the organs. So there is no cure for that. There
are working on things, but there is enzyme replacement therapy
that's been out for about just under twenty years, so
that's been a great plus for people with fabric and
(04:16):
has helped immensely. It's easily passed on. It's pretty much
if you have fabty disease, you can pass it on
in fifty to fifty percent of each pregnancy. So once
you diagnose one person in the family, they often come
up with probably a good five that also might.
Speaker 1 (04:38):
Have it, joining us. As we mentioned Lori why she
does suffer from the disease and was diagnosed at age fourteen.
Now you say you consider yourself to be fortunate but
as I look through some of these symptoms, Laurie, it
might be difficult to distinguish it from maybe symptoms of
some other kind of malady, disease, or temporary condition. You
(04:58):
mentioned high fevers, wide range of symptoms that include chronic pain, fatigue,
heat intolerance, hearing loss, progressive organ damage. That's, like I said,
a wide spectrum of symptoms. But what helped narrow it
in your case to fabric disease and how you were
able to identified or how doctors were.
Speaker 2 (05:17):
The reason I do consider myself fortunate is because my mom,
who had fabric and passed it on to my siblings
and myself, she had a great uncle who just happened
to be in the right place at the right time,
near Mayo Clinic, went in with some pretty vague symptoms,
(05:38):
several of which you just mentioned, and they diagnosed him.
So having that background, we just we came to know
who had it and who didn't. In my mom's days,
she just knew that my little brother had fabric. There
weren't They weren't really testing for it then as they
(06:01):
are now, but she had just seen the same symptoms
in her brothers and in her family.
Speaker 1 (06:08):
Laurie when it comes to treatment, what kind of course
of treatment have you endured over these years. Obviously you've
been able to survive it, and that's a tremendous blessing,
But detecting it early, I'm sure is critical to treating
it effectively. So how would you advise people out there
look out for this sort of thing? And as you said,
there is no cure, but it is treatable and they
(06:29):
are working every day. I would imagine on potential cures
for this, where does it go from there? Once diagnosed?
Speaker 2 (06:36):
You're right the reason it's often well, I've been misdiagnosed
till i was almost forty years old. I was treated
for irritabobile, which I don't actually have, migraines, which I
also don't actually have. None of those are due to fabory.
So several medications I've tried over the years have worked
(07:00):
until finally got the correct diagnosis. You know, one of
the more significant symptoms. Even kidney specialists will will recommend
that several of their nurses, if who have kidney patients,
might just ask the simple question, if you're able to sweat?
(07:23):
Most people are able to sweat. Non sweating is actually
a very key thing about fabriy patients and a simple
question can kind of help diagnose somebody early. Otherwise. They're
working on adding it to the newborn screening panel in Colorado.
(07:43):
It's already been included in a couple of states as
of now, and they hope maybe in two to three
years it'll be part of that newborn screening panel because,
as you said, Ryan once earlier, diagnosis is obviously better
for everyone involved.
Speaker 1 (08:02):
Fascinating the medicine and the rate at which you can
accelerate once they find kind of a key to unlock
what causes this disease, and we pray and hope for
that day when a cure does come down the line.
But final word from you, Laurie, as we approach these holidays,
and I wish you a merry Christmas in a happy
New Year. Is where people can go if they're just
hearing about this for the first time, and you know,
(08:24):
they hear a radio interview, it could fly past them
at a high rate of speed. Is there a website
they can check out? Is there a Facebook page, anything
that you would advocate for people to find out more information.
Speaker 2 (08:35):
Yes, there are actually two wonderful websites. One ISP SIG.
It's Fabriary Support and Information Group f FIG. I think
it's f FIG dot org. And then there's also NFDF
National Foundation or Fabric Disease. Both of those have lots
(08:58):
of information people to contact to get help in your area.
You know physicians who are knowledgeable. We're fortunate to have
a children's hospital in our backyard that is very fabri familiar.
They have a metabolic clinic there and see lots of
(09:21):
patients for fabric and also University Hospital the adult genetics
department is also very familiar. So we're, like I said,
fortunate in that regard, and I guess that's all I've
got on that.
Speaker 1 (09:39):
We appreciate that information and your time. And for those
that heard those various outlets you can check out I'm
looking at one of them that's National Fabric Disease Foundation
and it's simply online at Fabridisease dot org, f A
b R y Disease dot orgon and you might be
hearing about symptoms for the first time. If it helps
just one person out there kind of put this all together,
(10:00):
then we will have done our job here. And she
does their job on a daily basis and raising awareness
and especially during this holiday season when you're meeting with
friends and family, and especially your family members, can have
these conversations, do that research and hopefully be able to
nip something like this in the budge. She is Lori Wise. Laurie,
thank you so much for your time today. Have a
wonderful holiday season. We'll talk to you again down the line.
Speaker 2 (10:22):
Thank you, Ryan. Merry Christmas and Happy New Year to you, Joe.
Speaker 1 (10:24):
Thank you indeed, Merry Christmas, Happy New Year. Lori Wise
joining us raising awareness on fabric disease and one more
time that website fabridisease dot org for the National Fabric
Disease Foundation a time out, We're back wrapping up our
number one on this Tuesday edition of Ryan's Sheeling Live.
After this
Popular Podcasts
True Crime Tonight
If you eat, sleep, and breathe true crime, TRUE CRIME TONIGHT is serving up your nightly fix. Five nights a week, KT STUDIOS & iHEART RADIO invite listeners to pull up a seat for an unfiltered look at the biggest cases making headlines, celebrity scandals, and the trials everyone is watching. With a mix of expert analysis, hot takes, and listener call-ins, TRUE CRIME TONIGHT goes beyond the headlines to uncover the twists, turns, and unanswered questions that keep us all obsessed—because, at TRUE CRIME TONIGHT, there’s a seat for everyone. Whether breaking down crime scene forensics, scrutinizing serial killers, or debating the most binge-worthy true crime docs, True Crime Tonight is the fresh, fast-paced, and slightly addictive home for true crime lovers.
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.
The Clay Travis and Buck Sexton Show
The Clay Travis and Buck Sexton Show. Clay Travis and Buck Sexton tackle the biggest stories in news, politics and current events with intelligence and humor. From the border crisis, to the madness of cancel culture and far-left missteps, Clay and Buck guide listeners through the latest headlines and hot topics with fun and entertaining conversations and opinions.