Stigmas of Lupus w/ Robert Reinhart & Sara Bentley

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/

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Transcript

Intro: 0:00

Welcome to DisAbility Talks, a podcast produced by Abilities in Motion. I'm your host, Shelly Houser. Join us for real conversations and no-nonsense talk from everyday people with disabilities, living their most independent, everyday lives. Tune in for the latest news surrounding disability, accessibility, and independence, where conversations aren't dissed and stories that need to be told aren't missed. So let's talk.

Shelly: 0:27

Welcome back everybody. I'm your host Shelly Houser and today's guests are Vice President of Biller Reinhart Engineer Group and Florida's Lupus ambassador, Rob Rhinehart. National Walk Manager for the Lupus Foundation from Washington DC. Sarah Bentley also joins us. Lupus is an auto-immune disease that affects approximately 1.5 million Americans. And they're here to tell us more about this disease. Welcome, and good morning everybody. Thanks for being on the show.

Sara: 0:52

Good morning. Hi Shelly. Thank you for having us on today.

Rob: 0:56

Yes. Thank you so much for hosting this for us today. And we hope to answer a lot of questions and provide a lot of information regarding events that we have cross the country and advocate and inform.

Shelly: 1:15

Thank you. And we're looking forward to it. That's why we do this show. So can one of you tell us what exactly Lupus is and what causes this disease?

Sara: 1:24

Sure, Shelly I'll answer that. Uh, Lupus is a chronic, which is long-term disease and can cause inflammation and pain in any part of the body. Uh, it's an auto-immune disease, which means that your immune system, the body's system that usually fights infections actually attack healthy tissue instead. Um, no one knows what causes Lupus, but Lupus and other auto-immune diseases do run in families. Uh, experts also think it may be, um, developed in response to certain hormones like estrogen or environmental triggers. Um, an environmental trigger is something outside the body that can bring on symptoms of Lupus or make them worse.

Shelly: 2:13

Do we know what causes it? Is it hereditary?

Sara: 2:17

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 all the same, so that poses a challenge in research and, uh, solving what we call that cruel mystery of, of Lupus. So.

Shelly: 2:37

I believe there are 21 auto immune diseases. Is that correct, Sarah?

Speaker 2: 2:42

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 also other auto-immune in the family or within your yourself. Can

Shelly: 2:57

You treat them all the same way or do they have different signs and challenges?

Sara: 3:04

Right. So there's no, um, one first sign or symptom of Lupus. Um, the early signs and symptoms of Lupus are generally the same as the symptoms itself of Lupus. So including extreme fatigue, joint pain, or butterfly rash, however, the early signs vary widely again from person to person. Um, so they can range from mild to life-threatening and can come and go over time. Um, again, common symptoms include extreme fatigue, headaches, painful, or swollen joints, fever, anemia, a butterfly sheep rash on the face, uh, photosensitivity, hair loss, abnormal blood clotting, mouth or nose ulcers, pain in the chest on deep breathing with fingers turning white and/or blue when cold. We do have a scientist symptoms checklist that one can download, fill out and print and bring to their doctor's appointment, to have that conversation with their physician too.

Shelly: 4:04

Rob, do you just have Lupus or do you have other and diseases mixed in with this?

Rob: 4:10

Um, yeah, I had, uh, other auto-immune diseases mixed and mixed in and I'm like, uh, Sarah said they have one auto-immune it seems like others, uh, follow along and come with it. And that makes it somewhat challenging for diagnosis. It took about three years for a diagnosis for me. And, um, I had, uh, a wide range of symptoms for about three years with, uh, stiff and swelling in joints particular in my hands. And, uh, I was getting joked around with the kids, you know, going outside in the cold, as cold as it does get in Florida, my fingers would turn blue and white. And I said,"Oh, I have zombie fingers." Of course that was funny until they started hurting. And that was a little crazy. I didn't understand what that was. And uh, we get a little bit of a rash, not too much on my face, uh, some mouth ulsers, but also the headaches and fatigue and, some, uh, GI issue. So all that seemed very unrelated. And, um, I had my gallbladder removed and after that, a lot of the symptoms started increasing and evolving and uh, had to go to the hospital cause they thought I was having an appendicitis and it turned out to be a lot of inflammation in my, uh, small intestines. So the GI doctor on ER duty that night, uh, suspected a little bit more going on, did some blood tests came back and said, you need to see a rheumatologist. You have Lupus. So once I got to the rheumatologist she started going down a checklist as Sarah had mentioned about take into your doctor beforehand. Uh, and one of those was the, you know, the white fingers the fatigue, the swelling, stiff joints, the headache put it all together with other lab work, diagnosed Lupus. But then, uh, so I have Raynaud's, which is the blue/white fingers and also a thyroid condition, Hashimoto's. I had eventually got a diagnosis of Sjogren's too as well. So some other auto-immune has come along with it.

Shelly: 6:33

How did you feel about finally getting your diagnosis? Was it a relief or was it overwhelming for you.

Rob: 6:40

Somewhat of relief, but a little bit overwhelming because I really didn't know what it was. And it was somewhat of a challenge at the time because we did not know what it was. And the only person we knew that had it was a previous neighbor of ours who passed away from it. So that kind of set us off, and when I say us, my wife April and I, off on a little bit of a panic mode of trying to find out what this was and how we were going to deal with it. So somewhat of a relief that we knew what it was and now what are we going to do about it.

Shelly: 7:22

Yeah. What brings you physical or mental relief from all of these symptoms?

Rob: 7:27

I guess mental relief would be finally, I mean, there's a lot of tests and diagnosis part where they have doctors kind of corral all your, your, your symptoms and what your Lupus brings with it. Uh, starting with the neurological, your muscular, skeletal system, all your, all your organs and things like that. They kind of go through and check everything out with your heart, your lungs, um, uh, your nerve system, things like that. And then finally getting all that corralled in and then start treating it. Uh, unfortunately, which I was a little bit shocked over was there was no cure for it. Um, and it was basically managing that manifestations of all, uh, all your Lupus symptoms and what it brings. So, um, to me, it was more of a mental, 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 to keep those in check all the time.

Shelly: 8:31

So it wavers in and out of how you're feeling from day to day or week to week sometimes?

Rob: 8:36

It can actually can vary from morning till evening, um, based on the level of stress or what you're doing or, um, yeah, so it varies greatly for me.

Shelly: 8:50

That's interesting. Sarah, what do we know about Lupus right now? Kind of breakthroughs are happening, if any?

Sara: 8:57

Yes. So there is more research being done and Lupus treatments than ever. Um, just last week we received the exciting news that the FDA approved a new treatment for Lupus. Um, so the FDA approved, uh, Saphnelo, uh, treatment for adults with moderate to severe systemic Lupus SLE who are receiving standard therapy. And it is the third US FDA approval of Lupus therapy since 2011. And this expands treatment options for this, um, medically underserved and life threatening auto-immune disease. Um, and then earlier this year, the FDA approved Lupkynis for the treatment of Lupus nephritis, um, a Lupus related kidney disease, which affects up to 60% of people with Lupus and late last year, the FDA approved Benlysta, which originally Benlysta itself is approved in 2011 after 50 years prior to that of no FDA approved medications for Lupus. Um, but Benlysta to treat Lupus nephritis. Um, and Benlysta, like I said, was previously approved by the FDA for the treatment of Lupus in 2011. So, um, there's a lot of progress being made. Um, but there's still work to be done to ensure that people with Lupus have an arsenal of treatments and safe treatments to manage their disease. And, um, more research needs to be done to better understand Lupus and how to manage it and ultimately find a cure.

Shelly: 10:28

Rob, are you on any of these medications that she talks about being approved and do they help you at all with your symptoms?

Rob: 10:37

Yes. Um, back in 2013, um, my rheumatologists, um, wanted me to try, I've been less, uh, um, I was having trouble at the time of, uh, ringing in my, my ears pretty severely. Uh, so of course you have to do a whole bunch of other things, uh, ruling out, um, uh, hearing loss. Uh, and finally we kind of honed in on auto-immune inner ear disease, which is tough to diagnose. Um, but some more blood work, um, certain proteins in your blood system. Uh, I had very low levels of, um, uh, compliments, I guess I should say. And with those, uh, she was like, 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 put me on that back in 2013 and every four weeks I go in for an infusion. So that brought up my compliment levels 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 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 a good thing. It's not as harsh as taking some of, you know, uh, all the steroids prednisone is pretty hard. So I've been able to back down off, off of the prednisone, which is, uh, one of the frontline treatments. Um, but that has this other issues too, when you have, uh, take too much prednisone. Um, but anyway, yeah, so the Benlysta 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 a panel discussion, I think recently. Tell us more about what April does 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 change my eating. Um, let me first say I was not the, I did not have the best diet put it that way. Don't like to cook rather just have cereal 24/7. Um, my general doctor was like, yeah, you need to cut out some of this, uh, processed sugar flour. Um, yeah. Uh, you don't need a certain, uh, diet to follow, uh, before we, I was even diagnosed with Lupus cause I was having so many problems and, um, when I started reading, I said, there's just no way I can follow this. But April was like, no, we can do this. She is of course a great cook and a good baker and was adapting certain things. And, uh, and eventually we, I came around to see, oh yeah, okay certain veggies and certain fruits and things like that are, are, are good. 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 we need to go to the emergency room or she pushes me to the doctor cause I have a tendency to say, well, okay, I have this, uh, symptom, or I don't feel really well. Or maybe I'll just wait until tomorrow 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 given her the executive authority on making those kinds of decisions as 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 other people, uh, that have, uh, family members, uh, with, with his too and just chat back and forth how they handle it. So they get ideas from each other 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're going to take a short commercial break and we'll be back.

Ad: 15:00

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Shelly: 15:48

Welcome back listeners. We're here with Sarah Bentley and Robert Reinhart from the Lupus Foundation. Rob, your team's name is the Wolf Repellent crew. And for our viewers on our YouTube channel, we can see the Wolf Repellent logo in the back there. How did you come up with this name and this, this logo?

Rob: 16:06

Um, when I, after being diagnosed, it was Lupus. Um, again, we were scrambling and trying to find information on the disease and how to treat it and finding other people. And, um, 2011, uh, in Tampa, uh, the Lupus Foundation, uh, had the, uh, Walk Event, which is a, which is a fundraiser, but also, uh, um, it brought people together 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, the area. So team name, Wolf Repellent Crew. Uh, the Latin term for a Wolf is Lupus, but also facial rash that, uh, people come up with sometimes leaves scars. For, uh, the singer Seal as those pop marks on his cheeks. So it resembles a wolf bite. So that's a part of where the term comes from. So, uh, we use the Wolf Repellent Crew as our name.

Shelly: 17:20

Brilliant. And you guys call each other the purple warriors. Is that right?

Rob: 17:26

Yeah, I guess purple is the color, uh, we use for Lupus, uh, awareness and of course everybody'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 lot of public advocacy for Lupus, I guess, on a national level. She had her kidney donated recently in recent years as well. Does she bring a lot of awareness and insight? And does it matter that she's a public figure that brings a lot of awareness to this disease?

Sara: 18:09

It does. I mean, if you think about in terms of her platform and her followers and her story and the way she talked about it, as well as her kidney transplant and with her best friend, um, who donated the kidney it's, if you watch the interview, it's very touching. Um, and she's just got an incredible fan base. You know, that, again, it definitely helps educate because that's another challenge with Lupus, um, is in general, there's the general public knows little to nothing about Lupus. So, um, that's really, um, a focus of ours as an organization too, is to bring about that awareness and educate so that people know more about it and, and really to get through the challenges of theirs, just knowing 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 the specifics of it that I then have to navigate if I could have it? So that's why we're here and to talk about it and bring the community together.

Shelly: 19:18

How do families with Lupus and patients with Lupus support each other, either locally 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 very challenging to, um, explain to others, which we have resources on how you can do that to better explain it. Um, but it's, uh, it's really about connecting each other. I think, again, as everyone's Lupus is different, a lot of people you may connect with another and be able to share stories, learn also what might work for one person to another to then say, you know what, I might want to bring that up with my physician to see if that's something that could work for me because, um, the right treatment plan can take a while to figure out, um, as well as just in general, that diagnosis journey can take on average of six years. Uh, so it's been a long time by the time you may have gotten your diagnosis to then realize, okay, well, what's next as Rob was saying, so that support is really connecting with others. And we have resources for that. We have an online support group called Lupus Connect. We have a network across the nation of, in, well before the pandemic in-person support groups, which are now virtual, uh, as well as, um, I'll mention, you know, more in terms of our program, the services, uh, health education specialists help you navigate your journey too.

Shelly: 20:39

I don't know if either one or both of you can talk to the point of what are the stigmas surrounding Lupus and what should the general community understand about this disease?

Sara: 20:49

Yes. Um, one stigma is that Lupus is contagious. Um, Lupus is not contagious. You can't catch Lupus or give it to someone else. Um, another stigma is that Lupus is related to HIV or AIDS. Um, Lupus is not like or related to HIV or AIDS. And with HIV or AIDS, the immune system is underactive and Lupus. The immune system is overactive. Um, and then I think the main stigma is,"but you don't look sick." You know, the signs and symptoms of Lupus may not be physically visible to others. So this makes it difficult for others to understand. So communication and education again is very important when speaking of loved ones or peers about Lupus.

Shelly: 21:35

Rob, do you have any, anything to add to that as far as stigmas that you see in your life?

Rob: 21:40

Lupus is a woman's disease.

Shelly: 21:41

Okay.

Rob: 21:42

Yes. Um, when we started, I started looking for information. Most of the information I found was geared toward women. So it was somewhat of a challenge to, to overcome that. And, um, couple of publications, um, I got to go along with some 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 back then, but slowly coming around, there's men's support groups and, um, there's very few. Uh, and, um, so that stigma is there as well. Cause I hear within these men support 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 them this. And so that's interesting, but only like one in 10 patients' diagnosis is men. So it's a small percentage, but we are here.

Shelly: 22:53

I would have to think that that's similar stigma to men getting breast cancer, you know, but these stigmas, these stigmas and microaggressions are what we need to crush and we need to talk about that and bring it to light. So I think the general society shouldn't make assumptions. Um, and I guess even the medical field can be wrong about it because it's not all the same. So lastly, how can our listeners find out Sara, from a national perspective, where to get, resources and help from you, and Rob in the Tampa Bay, Florida state, where they can sign up for a walk with the Wolf Repellent or donate to the Lupus Foundation or any of these wonderful things that are coming up?

Sara: 23:35

Yes. To get help you visit Lupus.org. Our website has a range of resources and topics from understanding Lupus, to living with Lupus, how to help in Lupus research, um, becoming an advocate, Rob's an advocate, and he's been on Capitol Hill, um, sharing your story. That's, um, very key and getting connected via our network of support groups. Um, and then even, uh, speaking with, uh, one of our national health education specialists to help navigate your Lupus journey. Um, our website is full of information, but there are also, as I mentioned, people with the health education specialists, you can speak one-on-one, it's confidential, 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 scroll through there, find teams, can find a Wolf Repellent crew. They can find my name and there's all kinds of links on there to either form a team, support a team, support a certain person that's already involved in the walk. Um, I guess Tampa has the walk. Sarah, does Fort Lauderdale have the 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 walk wherever they are in, in the nation. And they can donate directly online to either the national group or your group as well and find 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 to put out the Lupus-aurus.

Shelly: 25:41

Yes, the Lupus-aurus. And uh, everybody can recognize Rob Reinhart with his purple hair that he dawns for, for Lupus month. And, uh, so we'll look for that. So, well, thank you very much Rob and Sarah for joining us and educating us and informing us on all the stigmas and the facts of Lupus. I appreciate you joining us today 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 that Like and Subscribe button so you never miss an episode of DisAbility Talks.

Outro: 26:35

Thanks for tuning in to this episode of DisAbility Talks. Want to keep the conversation going? Then visit our website at abilitiesinmotion.org or connect with us on social media. And remember, don't dis my ability.