Amyloidosis: The Hidden Crisis in Black America

Episode Transcript

Speaker 1 (00:00):
You got it.
Good day everyone.
Thank you so very much.
I know you're like, you know,when they said 2 o'clock.
Well, you know how technologyis in today's day and age and
once again it got us.
But you know I am one that don'tgive up and you know someone

(00:26):
that say you can't do somethingor it ain't going to work.
You know, sandra L, it's goingto be like'm going to try it
anyway, because I'm going to getit to work, especially when it
comes down to the patientexperience, especially when it
comes down to bringinginformation in reference to the
marginalized community andthings that they should know and
be aware of.
Why?
Because I am sick and tired andtired and sick of our community
, especially our community, notgetting everything that they

(00:50):
should have when it comes tohealthcare.
I'm all for you going to thedoctor, I encourage you to all
patients to go to the doctor,but when it comes down to the
marginalized and you're going toget an example of exactly what
I'm saying Sometimes people gotto see what you're saying in
order for them to say, oh, I getit.
Now I understand when I say theunderserved, the marginalized

(01:16):
community and theunder-resourced community.
Many times I'm asked, sandra,aren't they all the same thing?
And my resounding response eachtime is no, they are not.
There are three differentaspects and sectors of the
population, and two most oftenespecially the marginalized and

(01:39):
the under-resourced getoverlooked sometimes because
we're so busy trying to lumpeverybody into one pool.
Everybody don't into one thing,they do not.
So today it was great pleasure.
I am fortunate enough, we arefortunate enough to have with us
Mr Art Steele.

(02:01):
Not only was he active in theprofessional world, but he
actually has a condition, ahealth condition that many of us
do not know about.
We have not heard about it.
When we have heard about it,it's in little, small circles.
I heard about it because myoldest sister passed away from

(02:23):
this very condition, so I knowabout it because personally I
felt it and so many others thatare listening today or listening
at whatever time you'relistening to the podcast, also
have these signs and symptoms.
They just wishing them away, andwe've got to stop wishing
things away and we've got tostart talking to our doctors.

(02:43):
And then we don't feelcomfortable talking to our
doctors.
And if we don't feelcomfortable talking to our
doctors, many of them are tryingto help us, but for some reason
you don't feel comfortabletalking to your doctor, you need
to actually look somewhere elsefor a doctor that you can talk
to.
But that line of communicationneeds to remain open.
For those doctors that were onmy sister's care, I thank them

(03:06):
very much, especially in theclinical trial that she was a
part of.
I thank them for accepting theclinical trial.
Unfortunately, she lost her lifedue to a time issue, but I'm
thankful, and I'm especiallythankful for those doctors who
those clinicians that areworking on behalf of Art Stills'
life and making sure that he isaround for a very long time,

(03:29):
because we all need him to bearound for a very long time.
You might be saying well,sandra, what health condition is
that you're talking about?
I'm going to go ahead and turnthis over to Art.
I'm going to have him explainwho he is, what he wants you to
know about the condition that heis living with, and then we'll
get started with the questions.

(03:51):
But once again, during thispatient experience week, please
take high notes of what's goingon and what we're talking about.
Mr Art Still, could you pleasego ahead and let everybody know
who you are and what conditionit is that we're speaking about
today?

Speaker 2 (04:07):
Well, I was going to say, sandra, I appreciate the
introduction and all too.
And again, you know, I alwaystell people, you know, because I
played in the NFL I was just ajob, taking care of my family
and all, and everybody has a job, so everybody's special and all
, and that's the way I look atit.
It was just a job taking careof my family and all.
But again, playing in nfl givesyou a platform where you know

(04:28):
people tend to maybe listen alittle bit more and all,
especially if you've beenexperiencing some conditions,
like you said, your sisterexperience and, um, my mom, my,
my, uh, you know when youexplain your sister and all this
brings, I got a nephew and alltwo had amniotosis and all too.
And that's just part of thestory, but it's just a matter of

(04:49):
.
And then you hear things too.
You said within our communityand all, where you know it's
that old line if you don't knowyour past, you're not going to
know your future and all.
And I know one of theingredients in that what's the
most important game we'replaying right now in his life?
And so if you don't know your,you know, pastor, three family
members and all two parents andall you know you can prepare

(05:11):
yourself for the future and alsoyour own kids.
You know, pass that onSometimes that you know we live
in a world now.
Now knowledge is starting toget out there.
That's why we are out heretalking about it right now.
But just a little background.
I'm from Camden, new Jersey,right across from Philadelphia,

(05:31):
grew up in the projectCenterville and the only means
of getting out of the projects,you know, economically I have
five sisters and four otherbrothers and I had my parents,
so it was 12 of us.
But the only means of gettingout of that economical area was
using my athletic skills and allwhich a lot of members of my
family and within the communityuse as a means of going to
college and getting educationand doing something with
themselves and all too.

(05:52):
So I had the opportunity.
I went to the University ofKentucky and then from there got
drafted by the Chiefs in 1978and got drafted right behind
Earl Cam.
I was the second player draftedand all and then played 10
years with the Chiefs and twoyears, you know, buffalo Bills
and all too.
And I just like to maybe give alittle background because you

(06:14):
know, as you brought up, there'sa lot of negative things as far
as a reference to you know,within our community and all
about pharmaceutical companies,doctors and all too, and I can
give you a history and allpharmaceutical companies,
doctors and all too, and I cangive you a history and all it
kind of developed with me andall.
He's my brother and all.
I got a brother 12 years agohad he had a heart transplant,

(06:35):
matter of fact, he had it upuniversity of chicago medical
center and all too.
And um, at that particular time, all the symptoms and all that
he had.
He had the carpal tunnelstenosis in the back, he had the
neuropathy in the feet, kidneyproblems.
That's when he startedaffecting his heart and then
eventually he had to have atransplant, all kinds of things.

(06:57):
And so for me, you know, seeinghim go through the process and
seeing medication and seeing allthe doctors and basically
having all these surgeries kindof put a bad taste in my mouth.
I was not anti-doctor,anti-medicine and all, but I
just didn't want to have nothingto do with it because I'd seen

(07:18):
the process my brother wentthrough and eventually they had
to open him up and do a hearttransplant.
But the crazy thing about thatis, I just found out recently.
You know I don't know how longyou've been know about the
amyotoxin ATTR affects, you know, one out of 25
African-Americans and all.
So what happened to me?
Through the NFL and all, wehave a program.

(07:38):
We go down to Tulane MedicalCenter every five years.
So the first time I went downthere, I think it was in 19, I
mean 2019, and I had the heartproblems already and I can.
You know, the crazy thing aboutthis is I can track my history
going back from playing ball.
All the symptoms that led up tomy heart problems were all

(07:59):
symptoms of ATTR, a geneticvariant that affects, you know,
one out of 25 African-Americansand all that you know.
I can track it all the way upuntil I had the heart problems.
And then what happened was whenI did go visit down at Tulane in
2023, Dr Keith Furtinam heworks with Tulane and he works

(08:22):
through the NFL PlayersAssociation through this program
.
He works for Tulane and heworks through the NFL Players
Association through this programa cardiologist Knew I was kind
of anti-medicine, almost doctorsand all too.
So he sat me down and he'sAfrican-American doctor and he
reasoned with me.
He said hey, I tell you what,give me a little background on
your family history.

(08:42):
So I started off with mybrother and then I kind of knew
where he was going with this,and all too somewhat, because
when I started tracing all mybrother's symptoms and each
symptom, the doctor, medication,surgery on his back he had
stenosis, I think he had anorthopedic doctor do the surgery

(09:02):
nicked his dorm.
Basically he was on the tableon his face for about 10 hours
until another doctor came in hadto fix it, but it never was
fixed.
Up until this day he's stillhaving serious problems.
He's in a wheelchair, he hasthe cath and all.
He's been cathed in probably 14, 15 years, manually and all as
a matter of fact.
I talked to him today and youknow, those types of things

(09:26):
scarring basically not onlyphysically but you know,
psychologically and all too.
So, seeing all those things.
And then, you know, talking todr um ferdinand and he started
asking these questions.
I gave him all the symptoms.
All the symptoms that he had isthe symptoms that I have and
all too.
And so then I started talkingabout some other family members.
I got a brother, my brother'smarried to my wife's sister.

(09:48):
He has the exact all thesymptoms, matter of fact, he's
got a heart pacer and adefibrillator in him.
He hasn't been tested, but Ican almost guarantee you that he
has it too, and I got someother brothers and sisters with
some serious symptoms and allthat.
He has it too, and I got someother brothers and sisters with
some serious symptoms and all.

(10:10):
So Dr Ferdinand told me he saidwhen you get back to Kansas City
, do a genetic test to see ifyou have this amidosis ATTR.
So when I got back in KansasCity, took the genetic test
which is a basic, they just swabyour mouth like with a Q-tip in
your mouth, nothing, you know,don't have to draw blood Found
out that I had it a couple ofweeks later.
Then I told my brother about it.
He had a genetic test, the onethat my brother James, who had

(10:33):
the heart transplant.
He had a genetic test.
He has it.
Then come to find out later on.
I just found out this maybe ayear or so ago with my brother
my older brother, no, when westarted talking.
When I finally told him in 2023about this.
He did a background check.

(10:55):
He had some records of his sonthat passed away in the hospital
because they misdiagnosed him.
They gave him, I think, toomuch pain painkiller or whatever
.
I don't know if they thought hehad sickle cell and plus he had
the amidosis and all.
So I don't know if they wereaware of it and all too.
But that caused his death, youknow, four years ago, and so you

(11:18):
know, with that said, the firstthing I thought about when I'm
starting getting out thisinformation about amidosis how
affect, you know,african-american family and all
first thing I think about myfamily.
I got five girls, six boys.
I got just had my 25thgrandchild, got a 26th one
coming up in September.
So the first thing you know I'mthinking family-wise, just my

(11:40):
own kids, and I got.
Four of my kids are firefighterand oldest one is 41 years old
and he already had shoulderreplacement.
He's having neck problems, someother things you know, I think
even with his heart and all.
So he's the one that's going tobe doing the net probably.
Well, I got eight of them saidthey're going to do the genetic
testing and all too in referenceto that.

(12:02):
But then you know, when youstart thinking not only that
family, then I'm thinking amongother families, football.
You know all the players andall how many players that I've
played against carpal tunnel,back problems, foot problems,
you know, as far as swelling,and I got hand problems as far
as gripping and coldness andthose types of things.

(12:24):
And then even a point too, ofnighttime, you know, having
those night sweats.
You know, I thought maybe I wasin pretty good shape.
I thought maybe I used to jokewith myself I'd be sweating at
night.
I thought I was playing a game.
You know, when I get up Ithought I was going over to the
stadium to get paid, man, butthere was no money there.
But you know, it was just acombination of things.

(12:57):
And so what I realized is, youknow, if we don't talk about
these things, we don't get thisinformation out within the
community, and all Everybody'sleft, you know, with the bag
open, so to speak, symptoms thatwe might think like as a carpal
tunnel.
People might think it's fromtyping or grabbing things and
all.
But when you get accumulationof things going on, it could be
that amidosis and if it's notdiagnosed, the same thing will
happen.
The same thing that happened tomy brother will happen to me or

(13:19):
anybody else.
Eventually it's going to affectyour heart and your organs now,
your liver, your kidneys andall too.
So that's with me.
It just made sense and you knowof of, of not only my own
family but not only with youknow my family as far as
football, but within my owncommunity and all too.
So we started Still for Life fora reason just to get awareness

(13:45):
out and also early detection.
You get awareness out andpeople understand the symptoms
and all and they get earlydetection.
They can.
They can avoid a lot of serious, serious, you know
repercussions from.
You know from the heart or thekidneys and those types of
things.
And that's the reason why youknow and, like I said, I

(14:05):
appreciate you for inviting meout and all too and you know
talking about my situation andall too.
But it's important that we alldiscuss and talk to each other
and know our family history,discuss and talk to each other
and know our family history.
And then not only know ourfamily history, I'm not saying
getting to other people'shistory, but we got neighbors.
Now we got family and friends.
That again, if you see somethings going on, we know the

(14:30):
symptoms.
It's always nice to talk orencourage, not that we're
doctors, but those symptoms canhave.
If you put them together andall you can put the piece of the
puzzle together and can avoid alot of serious illness down the
line.

Speaker 1 (14:44):
You know, and I'm so very glad and I'm so very
thankful to you.
One because you know what, as aformer NFL, once a football
player, always a football playeryou know what I'm keeping this
to myself.
You know I have to hateeverybody for everybody, and put
on this big athletic shoulder,where you know what, don't come

(15:10):
around me, don't talk to me.
I'm not going to share my story, but that's not what you did.
You actually said this isimpacting me and I always say
you know what your familyhistory is important.
I've written a journal.
That's a personal and familyhistory, because when I wrote
the journal, I wrote the journalbecause one, when we were going

(15:31):
through COVID, everything wasblamed on COVID, just like you
said, with carpal tunnel, yougot carpal tunnel.
Everybody say, oh, you gotcarpal tunnel, that just comes
from work, you don't need toworry about it, you wear this
brace for a couple of days.
It was actually those familyhistory conditions that we
actually had that we weren'taware of the fact that we had it

(16:10):
, because for a very long time,our community and it could have
happened to other communities aswell, but I can only talk about
our community.
Our community didn't talk aboutthese types of things.
Our community, the adults,learned about these things and
they kept it in adulthood, butas children we didn't know about
it.

(16:30):
As teens, we didn't know aboutthis stuff until it happened to
us, which was a lot of times,much later in life.
So when that actually happenslike that, you can't be
proactive.
So we've got to start workingtogether and I'm so grateful to
you that we are, you know,working with life and making
sure that the community is aware.

(16:52):
We can't keep keeping thesesecrets, guys.
These secrets are killing us.
These secrets are going to wipeaway our community.
So, whatever goes on, we'retaking a chance by not talking
about it.
We're taking the chance by notsharing it, not saying, hey, you
know what I used to make allthis money, but life is life and

(17:12):
life got the life in and now,because of it, I'm now going
through some changes.
I'm now seeing some things thatI could do differently, my
community could do differently.
I want to be that cornerstone,and I'm sure that there are
others that might be listening,that are listening to this or
watching us live, that aresaying Sandra, you know what I

(17:33):
can help, you know what I gotthe way to help, don't just help
me, help your community how,like I just said, you know what
it takes a village.
We can't do this alone.
It takes a village to cometogether to start sharing these
patient experience stories ofthis is what I went through.
These were some of the symptomsand you caught him early on when

(17:53):
he was speaking, which was oneof my questions was okay, well,
while you was playing footballdid you notice any of these
symptoms?
And it was just like, okay,they're gonna go away right, not
knowing that.
Seriously, there's somethingwrong with me that I need to get
checked out.
And, guys and ladies, thedoctors cannot read our minds if

(18:16):
we don't start speaking up whenwe go to the doctor and say
look, I know this is carp tunnel, but I also have these other
symptom signs going on.
Could you at least check,especially ladies, because a lot
of us a lot of times get gaslitinto certain things.
Important tool is called ourvoice and, just like Art is

(18:37):
using it, not so that he couldretire and sit home and be like
whatever happened to people thathappened, but so that we could
become more involved in gettingthat patient experience story
out.
We got to do better.
We have to.
If you have a story, pleaseshare it.
Please consider sharing it, notjust with yourself or your
close loved ones, but with yourcommunity.

(18:59):
Sometimes they'll listen,sometimes they won't, but guess
what?
You did your due diligence byletting them know.
You did your due diligence, butnot just speaking about it and
letting it go away, but you didyour due diligence by keeping it
in the media, keeping it on thenot on the sidelines, but
keeping it in the fray, wherepeople could get to know what's

(19:21):
going on and where they can goto get help and how they can go
to get help.

Speaker 2 (19:25):
So, art, I'm thankful to you that you did say I had
some symptoms, right, Sandra, Iwas going to say too, and I, you
know, we all too, and we allgrow in different environments.
But my mother you know five ofus boys she was a you know, you
call her all dog man.

(19:45):
She was only about that tallman.
We boys man.
She'd be pointing at us, manand we'd be shaking like a leaf
and all.
But the thing is one of thethings my mother instilled in us
and all too, especially myselfand all.
My mother used to always say ifyou see something wrong or
something going on in thecommunity and you can have an

(20:06):
effect as far as a positiveeffect and you turn your head
and just go away because it'snot affecting you, you're just
as guilty as whatever is goingon in the community and all too.
And that's the way I kind oflook at it.
I mean, it's just to me.
It's funny.
Like you know, I go to thesecharity events and do things in
the community and all, andusually you know you want to ask

(20:27):
a person their name and usuallytalk on my side.
You know when I'm talking folks, I'm asked you got any swelling
in your feet?
Hey, how you got any carpo?
You know just all thosesymptoms and all too that.
And I'm finding folks, man,that you know have.
We was in detroit, um, a monthago and all, and they did
genetic testing at this, youknow.
So we was doing a program andit was about over 40 something

(20:50):
people and they did free genetictesting on that program.
Right, there come to file.
Two weeks later, four folks inthere had didn't know it had
amyidosis, so wow, but it wasjust.
You know, that's that's whyit's an eye-opener and all too,
because a lot of the folks thatmay be having issues and they
said, even in the past, um, Ican go back to my

(21:12):
great-great-grandfather.
He had heart problems, you knowI, you know in his book they
used to call him the doc drjames.
Still, they used to call himthe doc Dr James Steele.
They used to call him the DrLepines.
When I was reading his bookthey said he died of heart
disease.
So it's in the history and all.
And that's why, you know, wetalk about passing the history
on and some people want to turna blind eye and like, in my

(21:34):
situation, it wasn't, I didn'tknow anything, only how I found
about it was 2023 through DrFerdinand, and then too late If
he didn't say anything to me.
Now who knows where I would behealth wise right now, and
that's why to me it's almostlike you got to pass that
information on, especiallysomething that benefits yourself

(21:54):
.
And all and again it's acombination of things too,
because, you know, I kind oflook at the healthcare industry.
You got the pharmaceuticalcompanies, you got the doctors,
then you got the patients, yougot the caregivers and all too.
So the doctor is doingeverything they can on their
part, and I'm not saying alldoctors, but most of the doctors
I know are pretty sincere inwhat they.

(22:15):
They're limited in somewhat, insomewhat.
You know what they can do.
Same thing with thepharmaceutical company.
You know you get bad names andall too, but trying to work as a
team to find a solution to theissues and problems.
And then I look at myself.
So if I'm part of that team,what am I doing on my side to

(22:37):
enhance, you know, my health?
A lot of times and I use theexample, like you know, you see
all the commercials about these,those type of thing.
You know.
You see people, man, I havethese issues either drugs use
doctors, but are we as patientsor, you know, taking those drugs
?
What are we doing for ourhealth?
Are we watching weed?

(22:57):
Are we doing exercise?
We're.
Are we watching what we eat?
Are we doing exercise?
Are we getting sleep?
How are we handling stress?
Those things can enhance and Ialways use that term.
You'll see.
If you go to the websitestillforlifeandallorg, you'll
see we say extending your shelflife.
The thing is, we can extend ourshelf life by just little
simple things.
You don't have to kill you, youdon't have to go out there and

(23:18):
try to be a bodybuilder.
You can make sure you get tosleep at night.
You know, staying up all nightlong is not too good for you too
.
And those are just what we putin our body.
You know a lot of processedfood, a lot of sugar.
We find out now thatcontributes to, you know, our
health issues.
So that's where it takes on ourpart not only be listening to

(23:38):
people like ourselves or doctorsor maybe people talking on the
subject, but digging in anddoing your own research and make
your own informed decision, andthat based on what I say or
somebody else or you might sayor whatever.
Making informed decisions.
And that's been the way of mylife, because even when playing

(23:58):
ball, you're always trying tofind how you can get a little
better and play a little longer,and so it's the same thing for
our house.
It's a matter of doing theresearch too you know what and
you're so.

Speaker 1 (24:13):
You're so true about that.
That's why I say you know andthat's why I give this
disclaimer in reference tospeaking with sandra l.
This is not about bashing thedoctors, because, you know, long
, long time ago doctors couldpractice medicine, so doctors
could be in your room with youfor hours on time.

(24:35):
Sometimes they could do homevisits they could do all this
stuff, but when medicine becamebusiness, well, all of that
stuff got stripped away.
So there are a lot of doctorsout here that go above and
beyond where they could be goingor where they should be going,
or even where they will get paidto go, because now they'll get

(24:57):
dinged if they spend five extraminutes with a patient.
So, we can't say it's alldoctors are bad, because all
doctors aren't bad.
There are some doctors that aregreat doctors and they go above
and beyond where they know theyshould be going, where they
know that at the end of the daythat they're going to get dinged
, or they know that at the endof the day that they're going to
get dinged, or they're going toget called into the office, hey

(25:19):
, why was you spending all thistime with this patient?
So, while they want to a lot oftimes and we all work, because
we why?
Because we have to work,because if we were all walking
around here meeting this, weprobably wouldn't be working
right.
But our doctors can only do somuch right now to help you as a
patient.
So they have rights andresponsibilities.

(25:40):
Exactly, there arepharmaceutical companies.
They do what they can.
They have a huge part.
You know, last year in November, for the first time and I have
to put this shout out For thefirst time time I had a
pharmaceutical company call meand say hey, sandra, can you
come speak?
And this AstraZeneca so I haveto put that out there who

(26:01):
actually invited me to thattable that I'm always talking
about.
Y'all are keeping the patientsaway from the table, and so they
invited me to come and speak.
They wanted to hear what it wasthat we needed as a patient,
what it is that we wanted, whatit is that we needed, so they
could try to make a little bitof dent.
Sometimes they do more thanthey can, sometimes they don't

(26:23):
do enough, right, but they haverights and responsibilities that
they follow Same thing with usas patients.
Patients have rights andresponsibilities.
One of our rights is to receiveoptimal healthcare.
I've been on the bandwagonforever and I'll continue to be
on the bandwagon forever, whenit comes to the under-resourced

(26:46):
and the marginalized, whichyou're considered a marginalized
patient because you're not poorand you're not rich, right, but
you have enough and you havethe resources around you to get
what you need to have, get whatyou need to get to continue on
the road of healthy living, oras much healthy living as you

(27:06):
can get.
So that marginalized patient.
A lot of times, though, they'releft out of the mix.
Nobody's concerned about themarginalized patient, which is
why we have to use our voice tospeak up.
Nobody's.
Oh, they make too much money,they don't qualify for this.
Just because we don't qualifyfor it doesn't mean we don't
need it and doesn't mean weshouldn't have it right.

(27:27):
But if we, as patients, don'tdo our right, which is to speak
up to our responsibility, whichis to self-advocate for
ourselves, will always be atthis point where we're at, where
we're behind the eight balltrying to push forward, and we
can't continue to be behind theeight ball.
We can't continue to beretroactive patients where we

(27:48):
just waiting for something tohappen before we make a move.
We can't keep doing it.
So it's our right andresponsibility to self-advocate,
to seek out the best, optimalhealthcare, whether you're
under-resourced, whether you'remarginalized or whether you're
underserved.
You need to speak out.
You need to, you know, haveevents, community events,

(28:09):
consider talking about thecommunity.
Community events where thecommunity is learning right, not
just you and you get theinformation.
You go away, you don't share itwith anyone but where the
community is learning from you.
So I'm thankful to you that youactually, like I said, I'm
thankful to you.
I laugh every time we speak,but I know that it's a serious.

(28:30):
You know, amyloidosis isserious.
Like I said, my oldest sisterwas diagnosed with amyloidosis.
She unfortunately passed awayon the operating table.
There's things that you know,we know.
Now that you know, we wish thatwe would have known them then.
But you know, the fight wasreal to try to save her life,
just as real as it is for us totry to save everyone else's life

(28:52):
who might not know that theyhave amyloidosis, because when
they go to the doctor and theyhave carpal tunnel, they're
diagnosed with carpal tunnel andeverything else goes away.
Stop, um, you bring up anothergood point.
Before we end, you bring upanother good point and that's
genetic testing.
For everyone that's listening,there are free genetic centers

(29:16):
throughout the United States.
I was actually fortunate enoughto thank you, Erin Poyant, who
is one of my LinkedIn buddies,for sending me the list.
She sent me the list.
However, when I got the list,it was about five minutes before
we started the video session.
It was about five minutesbefore we started the video

(29:37):
session.
If you need to know about thesesensors, where the free F-R-E-E
genetic testing centers are, sothat you can go and get some
free F-R-E-E help, please reachout to me and say Sandra, could
I have the list of where thegenetic centers are?
You know, later on more thanlikely in the first part of 2026
, I'll have.

(29:58):
I'll invite Erin to come in soshe can share some additional
information that she's workingon on her end.
But I do have the listing.
I will most definitely share itbecause, yes, we have to take
care of us.
We got to take care of us right, and we can't take care of us

(30:18):
if no one's doing it.

Speaker 2 (30:20):
Hey, sam, you brought up good Erin.
She's been very helpful to meand still for life, and all too.
Because all you mentioned aboutthe free testing and all if you
go on our site too I don't knowif you have, but the thing is
it's nice because this goes outnationally and all too.
So when I got resources, a pageon our resources like
amniotosis centers throughoutthe United States so they can go

(30:43):
and choose, let's say, ifthey're down in Florida or maybe
out in California, they gotsites in all places amniotosis
centers in these medicalfacilities and all that you can
call and get information aboutlocally in that particular area
where you live at, and all too.
But those are the things andall, like you said, of
understanding the symptoms andunderstand the symptom.

(31:04):
You know where you, you knowresources and doing genetic
testing and all that is you know.
That's, that's part.
But then the support system andthat's where it comes into play
.
I'm pretty fortunate.
I call him my pro-law.
So I done did 42 years of hardlabor.
I got a life sentence, but itwas just.
I'll give you an example.
You know, especially you knowwe talk about the gender thing,

(31:27):
men.
We don't have no issues.
We go to the doctors, butusually Dr Sprayer is my doctor
Amidosis doctor and we just seenhim about maybe a month ago or
so, and you think by now, after2023, I'm opening up to the
doctor and all.
And so the doc asked me somequestions and Liz is sitting

(31:48):
next to me and he said he askedme some specific.
Oh man, I'm doing great, I'mgoing back some old ways and you
know the parole officer overthere, liz, man, she's like this
and she spilled the guts on meand all.
But it was just one of thosethings and all.
That's where you knowcaregivers working together as a
team and again, sometimes it'sthat manhood.

(32:09):
Then we come, manhood thing.
So you know, while I'm right infront of dr spray, act like I'm
upset at her and then after weleave I give a big hug way to go
, girlfriend, she helped me out.
Man, I could keep my manhoodright there.
You just kind of laugh aboutthings, um, and that's.
You know, that's if you takethings too seriously and all.

(32:32):
I mean you want to take itserious, but laughter to me is
part of my medicine.
And then you know some otherthings as far as rest and those
types of things, but, um, it's,that's why a good support system
and you know anybody want toget in contact with me, they can
too, and all because that's howwe spread the word and help
each other out, and all becausesometimes we don't have that

(32:52):
support system as far as maybein the home and all like my.
I talked from there.
As soon as I'm finished I'll godown and visit him, but he's
he's the one that had thetransplant and he's having some
more heart problems and all too,because you know what we're
finding out.
And again, I'm not a doctorthat he done had this heart for
about 12 years and all, but hestill had the amidosis.

(33:14):
So that amidosis, I think, ifI'm not mistaken, is still
building in there and can affectyour organs even more so unless
you get medication to stop it,slow it down or whatever.
And I think he's having some.
You know all those surgeriesand all he had.
You know, back when he had itback, the doctor really messed
him up pretty bad.
So you know it's that.

(33:37):
You know support.
You know we all need support.
We got neighbors and all thetwo older ones.

Speaker 1 (33:43):
You're right, we most definitely do.
That's why I'm calling on allcommunities, whether it's a
community of color, whether it'sa community of women, whether
wherever it is a community ofyou, you can do this on your own
.
You can get through your healthchallenges on your own.
You can't.
So, don't get me wrong, and Idon't want you to say well, you

(34:05):
know it's dangerous that I can'tdo this if I don't have help.
But it does a whole lot ofdifference If in fact, we do it
as a community.
Community, if in fact we pullall our powers together and we
actually come and we actually.
You know, amlidosis is just oneof the rare health conditions
that we're now starting to findout about that have been

(34:26):
embedded in our family.
Genetically wise, it's just one.
We don't know everything aboutit just yet, but we know that
it's there.
We see the advertisements nowof them starting to talk about
different protocols foramlidosis, different medications
for amlidosis.
We see it, but we need to raiseit up just more.
I don't want to say just alittle more.

(34:47):
We need to raise it up morebecause, as Art was just saying,
he was at an event and it wasactually less than a month ago
and sitting there on speakingnotes to the people that were
sitting there that wasparticipating in this event was
the fact that they was going tocome in not knowing, but they
was going to walk out.
You got amyloidosis, you needto see a doctor.

(35:09):
Now they're on the road torepair.
Now they're on the road,hopefully prayerfully.
They went and they had aconversation with their doctors.
Now they're on the road torepair.
Now they're on the road to.
We can fix this.
This is some things that wehave to do.
I ask everyone all the time I amnot a clinical trial
participant just yet.

(35:30):
Even though I've had diabetesand I do have chronic kidney
disease, my doctors right nowdon't have me as a clinical
trial participant ever.
What will happen is that whenthe day comes where I have to go
and be a clinical trialparticipant, that's exactly what

(35:51):
I'm going to do.
Why?
Because I know more about itnow than I knew about it before.
So I'm asking you, my sisterwho passed away I didn't find
this out until it was brought tomy attention by one of my other
sisters that, hey, you work onthe amyloidosis.
You know, that's what Phyllispassed away from, and I actually
had to go and read her obituaryto find out that the only way

(36:14):
that she received the care thatshe did is because she decided
that she wanted to be a clinicaltrial participant.
What occurred was that she hadto wait while I fought tooth and
nail with the medical teambecause they didn't want to
allow her to have the surgerythat she needed.
So that waiting period added tothe prolongation of the fact
that she didn't have the surgerywhen she needed.

(36:35):
So that waiting period added tothe prolongation of the fact
that she didn't have the surgerywhen it could have actually
helped her even more.
So, guys, stop and ladies, stopwaiting and stop sitting and
stop second guessing andself-treating and everything
else you do.
Let's start looking at clinicaltrials how they can help our
communities.
Let's start looking at talkingto our doctors how that they can

(36:55):
help our communities.
Let's start looking at talkingto our doctors how that
communication can help ourcommunity.
Let's start partnering togetherso that we can bring a higher
sense of urgency to theseconditions that are impacting
our community, becauseabsolutely no one is coming to
save us.
That little yellow school busthat comes into everybody's

(37:17):
neighborhood, it's coming intoours, but if we don't know it's
there, it ain't stopping.
So let's do what we can do atall times to ensure that we're
getting the very best healthcare.
Not just health care.
We need the very best healthcare.
All right.
Before we close out, can yougive us two to three tips that

(37:37):
you would like to leave us with?

Speaker 2 (37:41):
Well, you know, I would say too, you know you was
talking about.
As far as in reference to withthe aminidosis, the ATTR, the
fexam, and there's one, there'sother effect.
You know Portuguese Irish, Imean, there's one, there's other
effect, you know PortugueseIrish, I mean there's a bunch of
aminidosis out there and alltoo, but the one you know in

(38:02):
reference to that American group, one out of 25, there is no
cure for it.
But the thing is they haveproduct lines out there that
will not let it go worse thanwhat it is.
They call them.
And, like I said, I'm not inthe farm, but at least if you
get it detected you can takethings that it won't progress

(38:23):
and get worse.
And that's where you know,where I'm at right now, and so
hopefully no transplants oranything like that for myself.
But as far as you know, givenyou know things within the
community, it's just man, it'salmost like keeping your eyes
open, not only for your familymembers, but you know the
workmates, you know people, yourneighbors and all, because you

(38:44):
see things.
Sometimes you see themsuffering things and you know
suggestions.
You know and again, we're notdoctors and all, but you know,
as we learn things, it's amatter of passing them on to our
young ones and all too.
And, as you know, I'm agrandfather.
You know passing on to mygrandkids and all too, and it's
just a matter of you knowtalking about these things

(39:05):
within community and all, andthen talk about the good things
in being able to talk to otherfolks about it and bring
awareness about not only justamidosis, like you said,
diabetes.
You know things that we can, wecan pass on and things that a
lot of times, it's not what wesay is our actions, and all too.

Speaker 1 (39:28):
You're dead right.
You certainly got that right.
It's not.
Sometimes, talking is good I'mone talking is very good, but
you have to put action behindthat talk.
In other words, if you're notdoing that, you just waste the
air, and none of us have time towaste air.
None of us at all have time towaste air.
So, as we're talking, so are,so are we doing?

(39:49):
What I would like to bring upbefore we close is that Chicago,
get ready, get ready, get ready.
On October 25th 2025, we will behosting and we actually will be
partnering with Still for Life.
We actually be partnering withChroma Health.
We'll actually be partneringwith Salam Wellness Center here

(40:10):
in the city of Chicago, as wellas Anthro Spa.
We will be coming together tohost a summit, a four-hour
summit, on what we need to bedoing, what to actually order
better order our health concernsand our health conditions, and
what diseases are out here thatwe don't know about.

(40:34):
Like what are they hiding fromus that we don't know about?
Like what are they hiding fromus that we don't know about?
Like sharing that education sothat all patients become big,
can become empowered and engagedin their own healthcare.
I could be engaged in yourhealthcare, but I want you to be
engaged in your healthcare, andwithout you being educated, it

(40:54):
just will not happen.
I don't know about you but me.
I know that I only get one life.
I promise everybody islistening.
If you hear Sandra L has passedaway, don't call my husband and
say, hey, you know, we heard ofthis new treatment that you can
revive her body and bring herback.
I don't want to have anythingto do with it, which is why I'm

(41:19):
doing what I can while I'm hereto ensure that not only I and my
family have access to optimalhealthcare, but my community as
well.
I say this all the time guys,each one, teach one.
Do not stop at teaching.
Reach one as well.

(41:41):
Each one, teach one.
Do not stop at teaching.
Reach one as well.
Each one, teach one.
Reach one.
If we can get this going to ahigher level, wow, like take a
longitudinal study and look back.
Look on five years from now.
Look back and say, well, we did, we really did this.
I feel good about the fact thatyou were actually able to help
to bring a sustainablehealthcare system where all of

(42:01):
us, not one patient, gets leftbehind because they say they
just don't know.
So if you're in Chicago andyou're interested in being a
part of the program that we'llbe having on October 25th,
please reach out to me.
All right, how do people get intouch with you if they want to
help you and they want toactually get more information on
you?

(42:21):
Where can they find?

Speaker 2 (42:22):
you, we have.
And again, you brought up someterms and all, and you talked
about Chroma Health and all.
Oh, arnie, over there, man,he's been very we're just like.
You know, you put both ourheads there, then we'll make a
butt.
No, I'm just joking.
Hey, I'm going to ask mybrother from another mother and
all.
But you know and I think hebrought up that point, you know

(42:44):
what you were saying like all ofus Educate to advocate.
So I mean, that's part of it,that's what we're talking about.
You know, we're educating soeverybody can advocate for
themselves and come togetherdoing these things.
But again, my website is likestill s-t-i-l-l, the number four

(43:05):
, and then life l-i-f-e dot organd on there.
You know, if you go in thereand and again, like I said, I'm
not in the pharmaceutical,pharmaceutical business, I'm not
a doctor or anything like thatwe tell our story, our family
story and stuff of what we'vebeen through as far as with the
Xamadosis, and then give someinformation, provide information
out there, like we talked aboutresources that people, if

(43:27):
they're in Seattle or whateverthey got places, they can call,
get more information, and thenon that you'll see all my
contact information.
Or you go on, then on thatyou'll see.
You know all my contactinformation.
You go on the website, you knowinfo it'll come right directly
to us and all because we workdirectly.
You know, with our website andour goal, our whole goal and
objective is not, you know, somepeople take maybe something and

(43:50):
use it to exploit, create aname, maybe make some money off
of it.
No, you know what we're doingis doing what we're supposed to
be doing.
You know the other line that mymother used to say and then you
hear it too.
They said when you help others,you help yourself.
And I just threw another H wordin there.
I said when you help others,you heal yourself.
And that's part of my healingprocess too, because you know,

(44:21):
once you get out there andyou're talking to other folks
and, as they say, there's peopledoing worst off.
You know we went, I went to theum the rare disease thing back
in february down in dc come tofind out there's over 10 000
rare diseases out there.
50 are kids and then 30 ofthose kids don't make it to
their five years old.
So I'm thinking, you know, I'vebeen very fortunate, I'll be 70
this year and all, but thething is I've been very

(44:42):
fortunate, so why wouldn't yougive back and do things that you
should be doing anyhow?

Speaker 1 (44:50):
yeah, you're right, and and for that I thank you.
I I am.
You know.
I asked you once before how dowe meet?
I don't know if it was, I don'tknow who it is.

Speaker 2 (44:59):
No, you know how we met.
No, you know how we met.
I met.
You know like I met most greatpeople through LinkedIn.
That's what it was throughLinkedIn.
And then that's the same thing,other professional folks you
know, the farming school doctors, people in general, just in
business and I didn't comeacross some great people, man,

(45:21):
that have great desires to makeit, make a positive influx
within our own community, healthwise, and all too.
That's been a good eye-openerfor me, because now my eyes have
changed somewhat, becausethere's a lot of great people
out there who want to do theright thing.
You might have a few out therewho are doing the wrong thing,

(45:44):
but dwell on the positive.

Speaker 1 (45:45):
And I do want to say this, as we're closing out for
today if you are watching thisand, once again, you want to
know where the free genetictesting is, please reach out to
me.
If you're watching this and youwant to reach out to Art and
you want, all right, maybe youhave a.

(46:07):
It's all about getting theinformation out there.
Maybe you have a show orpodcast or maybe you're doing
something hybrid and sometimesnot even hybrid.
Maybe you're doing something inyour city or your state where
you're like you know what.
We're looking for people, we'relooking for patients to come
out and add their voice.
We want to know what's going onin the minds of a patient.
I tell people this all the time.
Just reach out, reach out to me.

(46:29):
I can connect you with Art Onceagain.
Like he said, he's all abouthelping.
He wants to get the word outthere and I do see where we have
Ms Jacqueline Cox thatcommented great subject.
This, you know it is.
It's a great subject becausewe're helping people.
We are putting the informationout there that actually needs to

(46:49):
be put out there.
If you have any other commentsor you want to once again get in
touch with either one of us.
Please reach out.
Please just let us know.
I'm on LinkedIn.
Art is on LinkedIn.
You can find under Art.
Still, sandra L, you can findunder my profile.
It's out there.

(47:09):
I'm on LinkedIn.
I'm on Facebook.
I just ask that you take thisinformation and you become a
part of the Each One, teach, oneReach, One community and Sadie
McKenna.
I'm not sure if you had aquestion or a comment, but I
thank you so much for tuning in,because I do see that you're

(47:30):
tuned in.
So I thank you very much fortuning in to watch today, and
hopefully you'll take thismessage with you.
Remember, as I always say bekind.
It doesn't cost you a thing.
It's absolutely free for you tobe kind.
And when you be kind, guesswhat?

(47:50):
You're going to make somebody'sworld.
You're going to make somebody'sday.
You're going to make somebody'sday.
You're going to make somebodyfeel proud about themselves
because you spoke to them, andnot only did you speak to them,
but you was kind to them.
It costs nothing.
If we can only be kind to oneanother, we can get past a lot
of the stuff that comes our way.

Speaker 2 (48:09):
All right, thank you, my guy you, my guy, hey, hey,
hey, sandra, I owe you anorganic cup of coffee and all,
and, man, I love you, I loveexactly what you're doing and
all, and just keep up the finefight and keep up the good work
and tell our lc man to stand inthe corner tonight likewise and

(48:30):
tell miss elizabeth thank you somuch for helping us get this
started.

Speaker 1 (48:34):
We had some issues at the beginning, but tell her I
said thank you very much fromthe bottom of my heart.
I appreciate you.
I really do appreciate both ofyou.
Continue to have a great day.

Speaker 2 (48:46):
Okay, I appreciate you too.
You have a great day too, then.
Thank you Okay, see you Later.