September 10, 2021 • 26 mins
Robert J. Reinhart, PE, Vice President of Biller Reinhart Engineering Group and Sara Bentley, National Walk Manager for the Lupus Foundation, sit down with our host, Shelly Houser, on a new episode of DisAbility Talks!
Learn about Lupus and social stigmas associated with the disease with these amazing guests.
To find out more about our guests, visit these links:
Websites: https://www.lupus.org/
Twitter - @LupusOrg
Instagram - @LupusOrg
Facebook - LupusFoundationofAmerica and https://www.facebook.com/sara.bentley.3150
LinkedIn: https://www.linkedin.com/in/robert-reinhart-46360917/ and https://www.linkedin.com/in/sara-bentley-7464a14/
Want to be a guest on our show? Connect with us at:
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Intro (00:00):
Welcome to DisAbility Talks, a podcast produced by
Abilities in Motion.
I'm your host, Shelly Houser.
Join us for real conversationsand no-nonsense talk from
everyday people withdisabilities, living their most
independent, everyday lives.
Tune in for the latest newssurrounding disability,
accessibility, and independence,where conversations aren't
(00:21):
dissed and stories that need tobe told aren't missed.
So let's talk.
Shelly (00:27):
Welcome back everybody.
I'm your host Shelly Houser andtoday's guests are Vice
President of Biller ReinhartEngineer Group and Florida's
Lupus ambassador, Rob Rhinehart.
National Walk Manager for theLupus Foundation from Washington
DC.
Sarah Bentley also joins us.
Lupus is an auto-immune diseasethat affects approximately 1.5
million Americans.
And they're here to tell us moreabout this disease.
(00:49):
Welcome, and good morningeverybody.
Thanks for being on the show.
Sara (00:52):
Good morning.
Hi Shelly.
Thank you for having us ontoday.
Rob (00:56):
Yes.
Thank you so much for hostingthis for us today.
And we hope to answer a lot ofquestions and provide a lot of
information regarding eventsthat we have cross the country
and advocate and inform.
Shelly (01:15):
Thank you.
And we're looking forward to it.
That's why we do this show.
So can one of you tell us whatexactly Lupus is and what causes
this disease?
Sara (01:24):
Sure, Shelly I'll answer that.
Uh, Lupus is a chronic, which islong-term disease and can cause
inflammation and pain in anypart of the body.
Uh, it's an auto-immune disease,which means that your immune
system, the body's system thatusually fights infections
actually attack healthy tissueinstead.
(01:48):
Um, no one knows what causesLupus, but Lupus and other
auto-immune diseases do run infamilies.
Uh, experts also think it may be, um, developed in response to
certain hormones like estrogenor environmental triggers.
Um, an environmental trigger issomething outside the body that
(02:09):
can bring on symptoms of Lupusor make them worse.
Shelly (02:13):
Do we know what causes it?
Is it hereditary?
Sara (02:17):
Again, there's no known cause and the challenge is that
everyone's Lupus is different,so it affects everyone
differently.
Um, their symptoms are not allthe same, so that poses a
challenge in research and, uh,solving what we call that cruel
mystery of, of Lupus.
So.
Shelly (02:37):
I believe there are 21 auto immune diseases.
Is that correct, Sarah?
Speaker 2 (02:42):
I cannot say exactly if I know it was 21.
Um, but again, if you have one,you may have multiple
auto-immunes.
So with Lupus, you may have alsoother auto-immune in the family
or within your yourself.
Can
Shelly (02:57):
You treat them all the same way or do they have
different signs and challenges?
Sara (03:04):
Right.
So there's no, um, one firstsign or symptom of Lupus.
Um, the early signs and symptomsof Lupus are generally the same
as the symptoms itself of Lupus.
So including extreme fatigue,joint pain, or butterfly rash,
however, the early signs varywidely again from person to
(03:24):
person.
Um, so they can range from mildto life-threatening and can come
and go over time.
Um, again, common symptomsinclude extreme fatigue,
headaches, painful, or swollenjoints, fever, anemia, a
butterfly sheep rash on the face, uh, photosensitivity, hair
(03:44):
loss, abnormal blood clotting,mouth or nose ulcers, pain in
the chest on deep breathing withfingers turning white and/or
blue when cold.
We do have a scientist symptomschecklist that one can download,
fill out and print and bring totheir doctor's appointment, to
have that conversation withtheir physician too.
Shelly (04:04):
Rob, do you just have Lupus or do you have other and
diseases mixed in with this?
Rob (04:10):
Um, yeah, I had, uh, other auto-immune diseases mixed and
mixed in and I'm like, uh, Sarahsaid they have one auto-immune
it seems like others, uh, followalong and come with it.
And that makes it somewhatchallenging for diagnosis.
It took about three years for adiagnosis for me.
(04:31):
And, um, I had, uh, a wide rangeof symptoms for about three
years with, uh, stiff andswelling in joints particular in
my hands.
And, uh, I was getting jokedaround with the kids, you know,
going outside in the cold, ascold as it does get in Florida,
my fingers would turn blue andwhite.
(04:55):
And I said,"Oh, I have zombiefingers." Of course that was
funny until they startedhurting.
And that was a little crazy.
I didn't understand what thatwas.
And uh, we get a little bit of arash, not too much on my face,
uh, some mouth ulsers, but alsothe headaches and fatigue and,
(05:16):
some, uh, GI issue.
So all that seemed veryunrelated.
And, um, I had my gallbladderremoved and after that, a lot of
the symptoms started increasingand evolving and uh, had to go
to the hospital cause theythought I was having an
appendicitis and it turned outto be a lot of inflammation in
(05:37):
my, uh, small intestines.
So the GI doctor on ER duty thatnight, uh, suspected a little
bit more going on, did someblood tests came back and said,
you need to see arheumatologist.
You have Lupus.
So once I got to therheumatologist she started going
down a checklist as Sarah hadmentioned about take into your
(06:02):
doctor beforehand.
Uh, and one of those was the,you know, the white fingers the
fatigue, the swelling, stiffjoints, the headache put it all
together with other lab work,diagnosed Lupus.
But then, uh, so I haveRaynaud's, which is the
blue/white fingers and also athyroid condition, Hashimoto's.
(06:23):
I had eventually got a diagnosisof Sjogren's too as well.
So some other auto-immune hascome along with it.
Shelly (06:33):
How did you feel about finally getting your diagnosis?
Was it a relief or was itoverwhelming for you.
Rob (06:40):
Somewhat of relief, but a little bit overwhelming because
I really didn't know what itwas.
And it was somewhat of achallenge at the time because we
did not know what it was.
And the only person we knew thathad it was a previous neighbor
of ours who passed away from it.
(07:02):
So that kind of set us off, andwhen I say us, my wife April and
I, off on a little bit of apanic mode of trying to find out
what this was and how we weregoing to deal with it.
So somewhat of a relief that weknew what it was and now what
are we going to do about it.
Shelly (07:22):
Yeah.
What brings you physical ormental relief from all of these
symptoms?
Rob (07:27):
I guess mental relief would be finally, I mean, there's a
lot of tests and diagnosis partwhere they have doctors kind of
corral all your, your, yoursymptoms and what your Lupus
brings with it.
Uh, starting with theneurological, your muscular,
skeletal system, all your, allyour organs and things like
(07:51):
that.
They kind of go through andcheck everything out with your
heart, your lungs, um, uh, yournerve system, things like that.
And then finally getting allthat corralled in and then start
treating it.
Uh, unfortunately, which I was alittle bit shocked over was
there was no cure for it.
Um, and it was basicallymanaging that manifestations of
(08:14):
all, uh, all your Lupus symptomsand what it brings.
So, um, to me, it was more of amental, okay, this is all the
things we have to deal with.
This is all we have to manage.
Um, and then it's just trying tokeep those in check all the
time.
Shelly (08:31):
So it wavers in and out of how you're feeling from day
to day or week to weeksometimes?
Rob (08:36):
It can actually can vary from morning till evening, um,
based on the level of stress orwhat you're doing or, um, yeah,
so it varies greatly for me.
Shelly (08:50):
That's interesting.
Sarah, what do we know aboutLupus right now?
Kind of breakthroughs arehappening, if any?
Sara (08:57):
Yes.
So there is more research beingdone and Lupus treatments than
ever.
Um, just last week we receivedthe exciting news that the FDA
approved a new treatment forLupus.
Um, so the FDA approved, uh,Saphnelo, uh, treatment for
adults with moderate to severesystemic Lupus SLE who are
(09:19):
receiving standard therapy.
And it is the third US FDAapproval of Lupus therapy since
2011.
And this expands treatmentoptions for this, um, medically
underserved and life threateningauto-immune disease.
Um, and then earlier this year,the FDA approved Lupkynis for
the treatment of Lupus nephritis, um, a Lupus related kidney
(09:42):
disease, which affects up to 60%of people with Lupus and late
last year, the FDA approvedBenlysta, which originally
Benlysta itself is approved in2011 after 50 years prior to
that of no FDA approvedmedications for Lupus.
Um, but Benlysta to treat Lupusnephritis.
(10:03):
Um, and Benlysta, like I said,was previously approved by the
FDA for the treatment of Lupusin 2011.
So, um, there's a lot ofprogress being made.
Um, but there's still work to bedone to ensure that people with
Lupus have an arsenal oftreatments and safe treatments
to manage their disease.
And, um, more research needs tobe done to better understand
(10:24):
Lupus and how to manage it andultimately find a cure.
Shelly (10:28):
Rob, are you on any of these medications that she talks
about being approved and do theyhelp you at all with your
symptoms?
Rob (10:37):
Yes.
Um, back in 2013, um, myrheumatologists, um, wanted me
to try, I've been less, uh, um,I was having trouble at the time
of, uh, ringing in my, my earspretty severely.
(10:59):
Uh, so of course you have to doa whole bunch of other things,
uh, ruling out, um, uh, hearingloss.
Uh, and finally we kind of honedin on auto-immune inner ear
disease, which is tough todiagnose.
Um, but some more blood work, um, certain proteins in your blood
system.
(11:20):
Uh, I had very low levels of,um, uh, compliments, I guess I
should say.
And with those, uh, she waslike, okay, we need to get you
on a, another treatment,something that's a little bit
more refined and less harsh.
So I tried Benlysta so she putme on that back in 2013 and
(11:43):
every four weeks I go in for aninfusion.
So that brought up my complimentlevels and, um, that so far has
been working great.
And not only has it helped with,uh, the hearing, um, but it has
helped with, uh, fatigue, uh,the joint pain, um, and some
(12:04):
other other symptoms, um,unfortunately it didn't last the
full four weeks.
But hey, sometimes you're like,I'll take what I can get.
And, and it's, it's a, it's agood thing.
It's not as harsh as taking someof, you know, uh, all the
steroids prednisone is prettyhard.
So I've been able to back downoff, off of the prednisone,
which is, uh, one of thefrontline treatments.
(12:27):
Um, but that has this otherissues too, when you have, uh,
take too much prednisone.
Um, but anyway, yeah, so theBenlysta has been very helpful.
Shelly (12:36):
Your wife April, uh, has also involved in organizing the
walks down in the Tampa Bay,Florida area.
Uh, she's been also part of apanel discussion, I think
recently.
Tell us more about what Aprildoes as an ambassador and I
guess your caregiver.
Rob (12:53):
Initially on, by, um, figuring out what we were going
to do with all this.
Um, we had to radically changemy eating.
Um, let me first say I was notthe, I did not have the best
diet put it that way.
Don't like to cook rather justhave cereal 24/7.
(13:14):
Um, my general doctor was like,yeah, you need to cut out some
of this, uh, processed sugarflour.
Um, yeah.
Uh, you don't need a certain, uh, diet to follow, uh, before we,
I was even diagnosed with Lupuscause I was having so many
problems and, um, when I startedreading, I said, there's just no
(13:36):
way I can follow this.
But April was like, no, we cando this.
She is of course a great cookand a good baker and was
adapting certain things.
And, uh, and eventually we, Icame around to see, oh yeah,
okay certain veggies and certainfruits and things like that are,
are, are good.
(13:56):
So she took that over very well.
Um, so, but also too, she's um,I had given her the executive
authority to decide whether weneed to go to the emergency room
or she pushes me to the doctorcause I have a tendency to say,
well, okay, I have this, uh,symptom, or I don't feel really
well.
(14:16):
Or maybe I'll just wait untiltomorrow to see if it gets any
better, but she'll be like, no,we need to do this now.
So I, like I said, I've givenher the executive authority on
making those kinds of decisionsas well, because sometimes I'm
pretty stubborn.
She has my back and, um, yeah.
And she does get involved too.
Um, she likes to talk to otherpeople, uh, that have, uh,
(14:39):
family members, uh, with, withhis too and just chat back and
forth how they handle it.
So they get ideas from eachother of how they're dealing
with it.
Shelly (14:48):
So she has a, a support network of her own as a
caregiver as well?
Rob (14:52):
Yeah.
Shelly (14:54):
Yeah.
Well, that's great.
Well, I think with that, we'regoing to take a short commercial
break and we'll be back.
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Shelly (15:48):
Welcome back listeners.
We're here with Sarah Bentleyand Robert Reinhart from the
Lupus Foundation.
Rob, your team's name is theWolf Repellent crew.
And for our viewers on ourYouTube channel, we can see the
Wolf Repellent logo in the backthere.
How did you come up with thisname and this, this logo?
Rob (16:06):
Um, when I, after being diagnosed, it was Lupus.
Um, again, we were scramblingand trying to find information
on the disease and how to treatit and finding other people.
And, um, 2011, uh, in Tampa, uh,the Lupus Foundation, uh, had
(16:27):
the, uh, Walk Event, which is a,which is a fundraiser, but also,
uh, um, it brought peopletogether in the community that
had Lupus just to, um, uh,function and the fundraiser and,
but also, uh, information and,uh, learning experience for, um,
(16:47):
the area.
So team name, Wolf RepellentCrew.
Uh, the Latin term for a Wolf isLupus, but also facial rash that
, uh, people come up withsometimes leaves scars.
For, uh, the singer Seal asthose pop marks on his cheeks.
(17:08):
So it resembles a wolf bite.
So that's a part of where theterm comes from.
So, uh, we use the WolfRepellent Crew as our name.
Shelly (17:20):
Brilliant.
And you guys call each other thepurple warriors.
Is that right?
Rob (17:26):
Yeah, I guess purple is the color, uh, we use for Lupus, uh,
awareness and of courseeverybody's a warrior fighting
day-to-day on keeping, moving,keeping themselves well,
healthy, or just, you know,making it through the day
sometimes.
Shelly (17:44):
One thing I thought of was Selena Gomez, the singer,
she really brings to light a lotof public advocacy for Lupus, I
guess, on a national level.
She had her kidney donatedrecently in recent years as
well.
Does she bring a lot ofawareness and insight?
And does it matter that she's apublic figure that brings a lot
(18:07):
of awareness to this disease?
Sara (18:09):
It does.
I mean, if you think about interms of her platform and her
followers and her story and theway she talked about it, as well
as her kidney transplant andwith her best friend, um, who
donated the kidney it's, if youwatch the interview, it's very
touching.
(18:29):
Um, and she's just got anincredible fan base.
You know, that, again, itdefinitely helps educate because
that's another challenge withLupus, um, is in general,
there's the general public knowslittle to nothing about Lupus.
So, um, that's really, um, afocus of ours as an organization
(18:49):
too, is to bring about thatawareness and educate so that
people know more about it and,and really to get through the
challenges of theirs, justknowing what Lupus is in
general, and then kind of like,you know, with any other
disease, you, you hear the word,you have a sense of what it is
and then, okay, what are thespecifics of it that I then have
(19:10):
to navigate if I could have it?
So that's why we're here and totalk about it and bring the
community together.
Shelly (19:18):
How do families with Lupus and patients with Lupus
support each other, eitherlocally on a net or on a
national level?
Sara (19:26):
Well, that, you know, Lupus can be a very isolating
disease.
It's, uh, again, it's verychallenging to, um, explain to
others, which we have resourceson how you can do that to better
explain it.
Um, but it's, uh, it's reallyabout connecting each other.
I think, again, as everyone'sLupus is different, a lot of
people you may connect withanother and be able to share
(19:48):
stories, learn also what mightwork for one person to another
to then say, you know what, Imight want to bring that up with
my physician to see if that'ssomething that could work for me
because, um, the right treatmentplan can take a while to figure
out, um, as well as just ingeneral, that diagnosis journey
can take on average of sixyears.
(20:09):
Uh, so it's been a long time bythe time you may have gotten
your diagnosis to then realize,okay, well, what's next as Rob
was saying, so that support isreally connecting with others.
And we have resources for that.
We have an online support groupcalled Lupus Connect.
We have a network across thenation of, in, well before the
pandemic in-person supportgroups, which are now virtual,
(20:30):
uh, as well as, um, I'llmention, you know, more in terms
of our program, the services,uh, health education specialists
help you navigate your journeytoo.
Shelly (20:39):
I don't know if either one or both of you can talk to
the point of what are thestigmas surrounding Lupus and
what should the generalcommunity understand about this
disease?
Sara (20:49):
Yes.
Um, one stigma is that Lupus iscontagious.
Um, Lupus is not contagious.
You can't catch Lupus or give itto someone else.
Um, another stigma is that Lupusis related to HIV or AIDS.
Um, Lupus is not like or relatedto HIV or AIDS.
And with HIV or AIDS, the immunesystem is underactive and Lupus.
(21:13):
The immune system is overactive.
Um, and then I think the mainstigma is,"but you don't look
sick." You know, the signs andsymptoms of Lupus may not be
physically visible to others.
So this makes it difficult forothers to understand.
So communication and educationagain is very important when
speaking of loved ones or peersabout Lupus.
Shelly (21:35):
Rob, do you have any, anything to add to that as far
as stigmas that you see in yourlife?
Rob (21:40):
Lupus is a woman's disease.
Shelly (21:41):
Okay.
Rob (21:42):
Yes.
Um, when we started, I startedlooking for information.
Most of the information I foundwas geared toward women.
So it was somewhat of achallenge to, to overcome that.
And, um, couple of publications,um, I got to go along with some
(22:03):
of the information I received.
Um, one of them was titled"Sister to Sister." Well, that
kinda leaves me out.
So, you know, it even goes backthen, but slowly coming around,
there's men's support groups and, um, there's very few.
Uh, and, um, so that stigma isthere as well.
(22:28):
Cause I hear within these mensupport groups, a doctor had
even said to one of them, well,you're, you're not a female.
You don't, you don't...
Men, don't get Lupus.
So we have doctors telling themthis.
And so that's interesting, butonly like one in 10 patients'
diagnosis is men.
(22:50):
So it's a small percentage, butwe are here.
Shelly (22:53):
I would have to think that that's similar stigma to
men getting breast cancer, youknow, but these stigmas, these
stigmas and microaggressions arewhat we need to crush and we
need to talk about that andbring it to light.
So I think the general societyshouldn't make assumptions.
Um, and I guess even the medicalfield can be wrong about it
(23:14):
because it's not all the same.
So lastly, how can our listenersfind out Sara, from a national
perspective, where to get,resources and help from you, and
Rob in the Tampa Bay, Floridastate, where they can sign up
for a walk with the WolfRepellent or donate to the Lupus
Foundation or any of thesewonderful things that are coming
(23:34):
up?
Sara (23:35):
Yes.
To get help you visit Lupus.org.
Our website has a range ofresources and topics from
understanding Lupus, to livingwith Lupus, how to help in Lupus
research, um, becoming anadvocate, Rob's an advocate, and
he's been on Capitol Hill, um,sharing your story.
(23:55):
That's, um, very key and gettingconnected via our network of
support groups.
Um, and then even, uh, speakingwith, uh, one of our national
health education specialists tohelp navigate your Lupus
journey.
Um, our website is full ofinformation, but there are also,
as I mentioned, people with thehealth education specialists,
you can speak one-on-one, it'sconfidential, um, as well.
Shelly (24:19):
And Rob, where can they find you?
Rob (24:22):
Just Google" Walk to End Lupus Now Tampa," that website
comes up and you can scrollthrough there, find teams, can
find a Wolf Repellent crew.
They can find my name andthere's all kinds of links on
there to either form a team,support a team, support a
(24:43):
certain person that's alreadyinvolved in the walk.
Um, I guess Tampa has the walk.
Sarah, does Fort Lauderdale havethe walk or is it Orlando?
Sara (24:54):
In the state of Florida, there is, um, Orlando,
Jacksonville, Miami, and Tampa.
Rob (25:01):
That's right.
Shelly (25:02):
Rob, when is the date of your walk this year in 2021?
Rob (25:05):
Well, we had to go virtual again.
We're going to have a nationwide, uh, a national walk day and
that's going to be October 16th.
Shelly (25:12):
And so people can join in online.
They can get out and walkwherever they are in, in the
nation.
And they can donate directlyonline to either the national
group or your group as well andfind teams, right?
Sara (25:22):
Right.
Rob (25:24):
Yes.
That's correct.
Shelly (25:25):
And then are you on any social media that is directly
Lupus related?
Rob (25:29):
Just my Walk page and stuff on Facebook.
Shelly (25:34):
And you have your T-Rex as your mascot, yes?
Rob (25:38):
Yeah.
Once in a while, we'll have toput out the Lupus-aurus.
Shelly (25:41):
Yes, the Lupus-aurus.
And uh, everybody can recognizeRob Reinhart with his purple
hair that he dawns for, forLupus month.
And, uh, so we'll look for that.
So, well, thank you very muchRob and Sarah for joining us and
educating us and informing us onall the stigmas and the facts of
Lupus.
I appreciate you joining ustoday for the show.
Sara (26:01):
Thank you.
Rob (26:02):
Yes.
Thank you for having us.
Speaker 1 (26:06):
And to my listeners.
Thanks for listening.
And don't forget to hit thatLike and Subscribe button so you
never miss an episode ofDisAbility Talks.
Outro (26:35):
Thanks for tuning in to this episode of DisAbility
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Then visit our website atabilitiesinmotion.org or connect
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And remember, don't dis myability.
Welcome to DisAbility Talks, a podcast produced by
Abilities in Motion.
I'm your host, Shelly Houser.
Join us for real conversationsand no-nonsense talk from
everyday people withdisabilities, living their most
independent, everyday lives.
Tune in for the latest newssurrounding disability,
accessibility, and independence,where conversations aren't
(00:21):
dissed and stories that need tobe told aren't missed.
So let's talk.
Shelly (00:27):
Welcome back everybody.
I'm your host Shelly Houser andtoday's guests are Vice
President of Biller ReinhartEngineer Group and Florida's
Lupus ambassador, Rob Rhinehart.
National Walk Manager for theLupus Foundation from Washington
DC.
Sarah Bentley also joins us.
Lupus is an auto-immune diseasethat affects approximately 1.5
million Americans.
And they're here to tell us moreabout this disease.
(00:49):
Welcome, and good morningeverybody.
Thanks for being on the show.
Sara (00:52):
Good morning.
Hi Shelly.
Thank you for having us ontoday.
Rob (00:56):
Yes.
Thank you so much for hostingthis for us today.
And we hope to answer a lot ofquestions and provide a lot of
information regarding eventsthat we have cross the country
and advocate and inform.
Shelly (01:15):
Thank you.
And we're looking forward to it.
That's why we do this show.
So can one of you tell us whatexactly Lupus is and what causes
this disease?
Sara (01:24):
Sure, Shelly I'll answer that.
Uh, Lupus is a chronic, which islong-term disease and can cause
inflammation and pain in anypart of the body.
Uh, it's an auto-immune disease,which means that your immune
system, the body's system thatusually fights infections
actually attack healthy tissueinstead.
(01:48):
Um, no one knows what causesLupus, but Lupus and other
auto-immune diseases do run infamilies.
Uh, experts also think it may be, um, developed in response to
certain hormones like estrogenor environmental triggers.
Um, an environmental trigger issomething outside the body that
(02:09):
can bring on symptoms of Lupusor make them worse.
Shelly (02:13):
Do we know what causes it?
Is it hereditary?
Sara (02:17):
Again, there's no known cause and the challenge is that
everyone's Lupus is different,so it affects everyone
differently.
Um, their symptoms are not allthe same, so that poses a
challenge in research and, uh,solving what we call that cruel
mystery of, of Lupus.
So.
Shelly (02:37):
I believe there are 21 auto immune diseases.
Is that correct, Sarah?
Speaker 2 (02:42):
I cannot say exactly if I know it was 21.
Um, but again, if you have one,you may have multiple
auto-immunes.
So with Lupus, you may have alsoother auto-immune in the family
or within your yourself.
Can
Shelly (02:57):
You treat them all the same way or do they have
different signs and challenges?
Sara (03:04):
Right.
So there's no, um, one firstsign or symptom of Lupus.
Um, the early signs and symptomsof Lupus are generally the same
as the symptoms itself of Lupus.
So including extreme fatigue,joint pain, or butterfly rash,
however, the early signs varywidely again from person to
(03:24):
person.
Um, so they can range from mildto life-threatening and can come
and go over time.
Um, again, common symptomsinclude extreme fatigue,
headaches, painful, or swollenjoints, fever, anemia, a
butterfly sheep rash on the face, uh, photosensitivity, hair
(03:44):
loss, abnormal blood clotting,mouth or nose ulcers, pain in
the chest on deep breathing withfingers turning white and/or
blue when cold.
We do have a scientist symptomschecklist that one can download,
fill out and print and bring totheir doctor's appointment, to
have that conversation withtheir physician too.
Shelly (04:04):
Rob, do you just have Lupus or do you have other and
diseases mixed in with this?
Rob (04:10):
Um, yeah, I had, uh, other auto-immune diseases mixed and
mixed in and I'm like, uh, Sarahsaid they have one auto-immune
it seems like others, uh, followalong and come with it.
And that makes it somewhatchallenging for diagnosis.
It took about three years for adiagnosis for me.
(04:31):
And, um, I had, uh, a wide rangeof symptoms for about three
years with, uh, stiff andswelling in joints particular in
my hands.
And, uh, I was getting jokedaround with the kids, you know,
going outside in the cold, ascold as it does get in Florida,
my fingers would turn blue andwhite.
(04:55):
And I said,"Oh, I have zombiefingers." Of course that was
funny until they startedhurting.
And that was a little crazy.
I didn't understand what thatwas.
And uh, we get a little bit of arash, not too much on my face,
uh, some mouth ulsers, but alsothe headaches and fatigue and,
(05:16):
some, uh, GI issue.
So all that seemed veryunrelated.
And, um, I had my gallbladderremoved and after that, a lot of
the symptoms started increasingand evolving and uh, had to go
to the hospital cause theythought I was having an
appendicitis and it turned outto be a lot of inflammation in
(05:37):
my, uh, small intestines.
So the GI doctor on ER duty thatnight, uh, suspected a little
bit more going on, did someblood tests came back and said,
you need to see arheumatologist.
You have Lupus.
So once I got to therheumatologist she started going
down a checklist as Sarah hadmentioned about take into your
(06:02):
doctor beforehand.
Uh, and one of those was the,you know, the white fingers the
fatigue, the swelling, stiffjoints, the headache put it all
together with other lab work,diagnosed Lupus.
But then, uh, so I haveRaynaud's, which is the
blue/white fingers and also athyroid condition, Hashimoto's.
(06:23):
I had eventually got a diagnosisof Sjogren's too as well.
So some other auto-immune hascome along with it.
Shelly (06:33):
How did you feel about finally getting your diagnosis?
Was it a relief or was itoverwhelming for you.
Rob (06:40):
Somewhat of relief, but a little bit overwhelming because
I really didn't know what itwas.
And it was somewhat of achallenge at the time because we
did not know what it was.
And the only person we knew thathad it was a previous neighbor
of ours who passed away from it.
(07:02):
So that kind of set us off, andwhen I say us, my wife April and
I, off on a little bit of apanic mode of trying to find out
what this was and how we weregoing to deal with it.
So somewhat of a relief that weknew what it was and now what
are we going to do about it.
Shelly (07:22):
Yeah.
What brings you physical ormental relief from all of these
symptoms?
Rob (07:27):
I guess mental relief would be finally, I mean, there's a
lot of tests and diagnosis partwhere they have doctors kind of
corral all your, your, yoursymptoms and what your Lupus
brings with it.
Uh, starting with theneurological, your muscular,
skeletal system, all your, allyour organs and things like
(07:51):
that.
They kind of go through andcheck everything out with your
heart, your lungs, um, uh, yournerve system, things like that.
And then finally getting allthat corralled in and then start
treating it.
Uh, unfortunately, which I was alittle bit shocked over was
there was no cure for it.
Um, and it was basicallymanaging that manifestations of
(08:14):
all, uh, all your Lupus symptomsand what it brings.
So, um, to me, it was more of amental, okay, this is all the
things we have to deal with.
This is all we have to manage.
Um, and then it's just trying tokeep those in check all the
time.
Shelly (08:31):
So it wavers in and out of how you're feeling from day
to day or week to weeksometimes?
Rob (08:36):
It can actually can vary from morning till evening, um,
based on the level of stress orwhat you're doing or, um, yeah,
so it varies greatly for me.
Shelly (08:50):
That's interesting.
Sarah, what do we know aboutLupus right now?
Kind of breakthroughs arehappening, if any?
Sara (08:57):
Yes.
So there is more research beingdone and Lupus treatments than
ever.
Um, just last week we receivedthe exciting news that the FDA
approved a new treatment forLupus.
Um, so the FDA approved, uh,Saphnelo, uh, treatment for
adults with moderate to severesystemic Lupus SLE who are
(09:19):
receiving standard therapy.
And it is the third US FDAapproval of Lupus therapy since
2011.
And this expands treatmentoptions for this, um, medically
underserved and life threateningauto-immune disease.
Um, and then earlier this year,the FDA approved Lupkynis for
the treatment of Lupus nephritis, um, a Lupus related kidney
(09:42):
disease, which affects up to 60%of people with Lupus and late
last year, the FDA approvedBenlysta, which originally
Benlysta itself is approved in2011 after 50 years prior to
that of no FDA approvedmedications for Lupus.
Um, but Benlysta to treat Lupusnephritis.
(10:03):
Um, and Benlysta, like I said,was previously approved by the
FDA for the treatment of Lupusin 2011.
So, um, there's a lot ofprogress being made.
Um, but there's still work to bedone to ensure that people with
Lupus have an arsenal oftreatments and safe treatments
to manage their disease.
And, um, more research needs tobe done to better understand
(10:24):
Lupus and how to manage it andultimately find a cure.
Shelly (10:28):
Rob, are you on any of these medications that she talks
about being approved and do theyhelp you at all with your
symptoms?
Rob (10:37):
Yes.
Um, back in 2013, um, myrheumatologists, um, wanted me
to try, I've been less, uh, um,I was having trouble at the time
of, uh, ringing in my, my earspretty severely.
(10:59):
Uh, so of course you have to doa whole bunch of other things,
uh, ruling out, um, uh, hearingloss.
Uh, and finally we kind of honedin on auto-immune inner ear
disease, which is tough todiagnose.
Um, but some more blood work, um, certain proteins in your blood
system.
(11:20):
Uh, I had very low levels of,um, uh, compliments, I guess I
should say.
And with those, uh, she waslike, okay, we need to get you
on a, another treatment,something that's a little bit
more refined and less harsh.
So I tried Benlysta so she putme on that back in 2013 and
(11:43):
every four weeks I go in for aninfusion.
So that brought up my complimentlevels and, um, that so far has
been working great.
And not only has it helped with,uh, the hearing, um, but it has
helped with, uh, fatigue, uh,the joint pain, um, and some
(12:04):
other other symptoms, um,unfortunately it didn't last the
full four weeks.
But hey, sometimes you're like,I'll take what I can get.
And, and it's, it's a, it's agood thing.
It's not as harsh as taking someof, you know, uh, all the
steroids prednisone is prettyhard.
So I've been able to back downoff, off of the prednisone,
which is, uh, one of thefrontline treatments.
(12:27):
Um, but that has this otherissues too, when you have, uh,
take too much prednisone.
Um, but anyway, yeah, so theBenlysta has been very helpful.
Shelly (12:36):
Your wife April, uh, has also involved in organizing the
walks down in the Tampa Bay,Florida area.
Uh, she's been also part of apanel discussion, I think
recently.
Tell us more about what Aprildoes as an ambassador and I
guess your caregiver.
Rob (12:53):
Initially on, by, um, figuring out what we were going
to do with all this.
Um, we had to radically changemy eating.
Um, let me first say I was notthe, I did not have the best
diet put it that way.
Don't like to cook rather justhave cereal 24/7.
(13:14):
Um, my general doctor was like,yeah, you need to cut out some
of this, uh, processed sugarflour.
Um, yeah.
Uh, you don't need a certain, uh, diet to follow, uh, before we,
I was even diagnosed with Lupuscause I was having so many
problems and, um, when I startedreading, I said, there's just no
(13:36):
way I can follow this.
But April was like, no, we cando this.
She is of course a great cookand a good baker and was
adapting certain things.
And, uh, and eventually we, Icame around to see, oh yeah,
okay certain veggies and certainfruits and things like that are,
are, are good.
(13:56):
So she took that over very well.
Um, so, but also too, she's um,I had given her the executive
authority to decide whether weneed to go to the emergency room
or she pushes me to the doctorcause I have a tendency to say,
well, okay, I have this, uh,symptom, or I don't feel really
well.
(14:16):
Or maybe I'll just wait untiltomorrow to see if it gets any
better, but she'll be like, no,we need to do this now.
So I, like I said, I've givenher the executive authority on
making those kinds of decisionsas well, because sometimes I'm
pretty stubborn.
She has my back and, um, yeah.
And she does get involved too.
Um, she likes to talk to otherpeople, uh, that have, uh,
(14:39):
family members, uh, with, withhis too and just chat back and
forth how they handle it.
So they get ideas from eachother of how they're dealing
with it.
Shelly (14:48):
So she has a, a support network of her own as a
caregiver as well?
Rob (14:52):
Yeah.
Shelly (14:54):
Yeah.
Well, that's great.
Well, I think with that, we'regoing to take a short commercial
break and we'll be back.
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Shelly (15:48):
Welcome back listeners.
We're here with Sarah Bentleyand Robert Reinhart from the
Lupus Foundation.
Rob, your team's name is theWolf Repellent crew.
And for our viewers on ourYouTube channel, we can see the
Wolf Repellent logo in the backthere.
How did you come up with thisname and this, this logo?
Rob (16:06):
Um, when I, after being diagnosed, it was Lupus.
Um, again, we were scramblingand trying to find information
on the disease and how to treatit and finding other people.
And, um, 2011, uh, in Tampa, uh,the Lupus Foundation, uh, had
(16:27):
the, uh, Walk Event, which is a,which is a fundraiser, but also,
uh, um, it brought peopletogether in the community that
had Lupus just to, um, uh,function and the fundraiser and,
but also, uh, information and,uh, learning experience for, um,
(16:47):
the area.
So team name, Wolf RepellentCrew.
Uh, the Latin term for a Wolf isLupus, but also facial rash that
, uh, people come up withsometimes leaves scars.
For, uh, the singer Seal asthose pop marks on his cheeks.
(17:08):
So it resembles a wolf bite.
So that's a part of where theterm comes from.
So, uh, we use the WolfRepellent Crew as our name.
Shelly (17:20):
Brilliant.
And you guys call each other thepurple warriors.
Is that right?
Rob (17:26):
Yeah, I guess purple is the color, uh, we use for Lupus, uh,
awareness and of courseeverybody's a warrior fighting
day-to-day on keeping, moving,keeping themselves well,
healthy, or just, you know,making it through the day
sometimes.
Shelly (17:44):
One thing I thought of was Selena Gomez, the singer,
she really brings to light a lotof public advocacy for Lupus, I
guess, on a national level.
She had her kidney donatedrecently in recent years as
well.
Does she bring a lot ofawareness and insight?
And does it matter that she's apublic figure that brings a lot
(18:07):
of awareness to this disease?
Sara (18:09):
It does.
I mean, if you think about interms of her platform and her
followers and her story and theway she talked about it, as well
as her kidney transplant andwith her best friend, um, who
donated the kidney it's, if youwatch the interview, it's very
touching.
(18:29):
Um, and she's just got anincredible fan base.
You know, that, again, itdefinitely helps educate because
that's another challenge withLupus, um, is in general,
there's the general public knowslittle to nothing about Lupus.
So, um, that's really, um, afocus of ours as an organization
(18:49):
too, is to bring about thatawareness and educate so that
people know more about it and,and really to get through the
challenges of theirs, justknowing what Lupus is in
general, and then kind of like,you know, with any other
disease, you, you hear the word,you have a sense of what it is
and then, okay, what are thespecifics of it that I then have
(19:10):
to navigate if I could have it?
So that's why we're here and totalk about it and bring the
community together.
Shelly (19:18):
How do families with Lupus and patients with Lupus
support each other, eitherlocally on a net or on a
national level?
Sara (19:26):
Well, that, you know, Lupus can be a very isolating
disease.
It's, uh, again, it's verychallenging to, um, explain to
others, which we have resourceson how you can do that to better
explain it.
Um, but it's, uh, it's reallyabout connecting each other.
I think, again, as everyone'sLupus is different, a lot of
people you may connect withanother and be able to share
(19:48):
stories, learn also what mightwork for one person to another
to then say, you know what, Imight want to bring that up with
my physician to see if that'ssomething that could work for me
because, um, the right treatmentplan can take a while to figure
out, um, as well as just ingeneral, that diagnosis journey
can take on average of sixyears.
(20:09):
Uh, so it's been a long time bythe time you may have gotten
your diagnosis to then realize,okay, well, what's next as Rob
was saying, so that support isreally connecting with others.
And we have resources for that.
We have an online support groupcalled Lupus Connect.
We have a network across thenation of, in, well before the
pandemic in-person supportgroups, which are now virtual,
(20:30):
uh, as well as, um, I'llmention, you know, more in terms
of our program, the services,uh, health education specialists
help you navigate your journeytoo.
Shelly (20:39):
I don't know if either one or both of you can talk to
the point of what are thestigmas surrounding Lupus and
what should the generalcommunity understand about this
disease?
Sara (20:49):
Yes.
Um, one stigma is that Lupus iscontagious.
Um, Lupus is not contagious.
You can't catch Lupus or give itto someone else.
Um, another stigma is that Lupusis related to HIV or AIDS.
Um, Lupus is not like or relatedto HIV or AIDS.
And with HIV or AIDS, the immunesystem is underactive and Lupus.
(21:13):
The immune system is overactive.
Um, and then I think the mainstigma is,"but you don't look
sick." You know, the signs andsymptoms of Lupus may not be
physically visible to others.
So this makes it difficult forothers to understand.
So communication and educationagain is very important when
speaking of loved ones or peersabout Lupus.
Shelly (21:35):
Rob, do you have any, anything to add to that as far
as stigmas that you see in yourlife?
Rob (21:40):
Lupus is a woman's disease.
Shelly (21:41):
Okay.
Rob (21:42):
Yes.
Um, when we started, I startedlooking for information.
Most of the information I foundwas geared toward women.
So it was somewhat of achallenge to, to overcome that.
And, um, couple of publications,um, I got to go along with some
(22:03):
of the information I received.
Um, one of them was titled"Sister to Sister." Well, that
kinda leaves me out.
So, you know, it even goes backthen, but slowly coming around,
there's men's support groups and, um, there's very few.
Uh, and, um, so that stigma isthere as well.
(22:28):
Cause I hear within these mensupport groups, a doctor had
even said to one of them, well,you're, you're not a female.
You don't, you don't...
Men, don't get Lupus.
So we have doctors telling themthis.
And so that's interesting, butonly like one in 10 patients'
diagnosis is men.
(22:50):
So it's a small percentage, butwe are here.
Shelly (22:53):
I would have to think that that's similar stigma to
men getting breast cancer, youknow, but these stigmas, these
stigmas and microaggressions arewhat we need to crush and we
need to talk about that andbring it to light.
So I think the general societyshouldn't make assumptions.
Um, and I guess even the medicalfield can be wrong about it
(23:14):
because it's not all the same.
So lastly, how can our listenersfind out Sara, from a national
perspective, where to get,resources and help from you, and
Rob in the Tampa Bay, Floridastate, where they can sign up
for a walk with the WolfRepellent or donate to the Lupus
Foundation or any of thesewonderful things that are coming
(23:34):
up?
Sara (23:35):
Yes.
To get help you visit Lupus.org.
Our website has a range ofresources and topics from
understanding Lupus, to livingwith Lupus, how to help in Lupus
research, um, becoming anadvocate, Rob's an advocate, and
he's been on Capitol Hill, um,sharing your story.
(23:55):
That's, um, very key and gettingconnected via our network of
support groups.
Um, and then even, uh, speakingwith, uh, one of our national
health education specialists tohelp navigate your Lupus
journey.
Um, our website is full ofinformation, but there are also,
as I mentioned, people with thehealth education specialists,
you can speak one-on-one, it'sconfidential, um, as well.
Shelly (24:19):
And Rob, where can they find you?
Rob (24:22):
Just Google" Walk to End Lupus Now Tampa," that website
comes up and you can scrollthrough there, find teams, can
find a Wolf Repellent crew.
They can find my name andthere's all kinds of links on
there to either form a team,support a team, support a
(24:43):
certain person that's alreadyinvolved in the walk.
Um, I guess Tampa has the walk.
Sarah, does Fort Lauderdale havethe walk or is it Orlando?
Sara (24:54):
In the state of Florida, there is, um, Orlando,
Jacksonville, Miami, and Tampa.
Rob (25:01):
That's right.
Shelly (25:02):
Rob, when is the date of your walk this year in 2021?
Rob (25:05):
Well, we had to go virtual again.
We're going to have a nationwide, uh, a national walk day and
that's going to be October 16th.
Shelly (25:12):
And so people can join in online.
They can get out and walkwherever they are in, in the
nation.
And they can donate directlyonline to either the national
group or your group as well andfind teams, right?
Sara (25:22):
Right.
Rob (25:24):
Yes.
That's correct.
Shelly (25:25):
And then are you on any social media that is directly
Lupus related?
Rob (25:29):
Just my Walk page and stuff on Facebook.
Shelly (25:34):
And you have your T-Rex as your mascot, yes?
Rob (25:38):
Yeah.
Once in a while, we'll have toput out the Lupus-aurus.
Shelly (25:41):
Yes, the Lupus-aurus.
And uh, everybody can recognizeRob Reinhart with his purple
hair that he dawns for, forLupus month.
And, uh, so we'll look for that.
So, well, thank you very muchRob and Sarah for joining us and
educating us and informing us onall the stigmas and the facts of
Lupus.
I appreciate you joining ustoday for the show.
Sara (26:01):
Thank you.
Rob (26:02):
Yes.
Thank you for having us.
Speaker 1 (26:06):
And to my listeners.
Thanks for listening.
And don't forget to hit thatLike and Subscribe button so you
never miss an episode ofDisAbility Talks.
Outro (26:35):
Thanks for tuning in to this episode of DisAbility
Talks.
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Then visit our website atabilitiesinmotion.org or connect
with us on social media.
And remember, don't dis myability.
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