SPEAKER_01: 0:03

Thank you so much, Arnie, for joining me today in speaking with Sandra L, the Patient Experience Podcast. I certainly want to thank you for being a partner of us as we move forward with the Unseen Health Summit, the first of many, which will be actually launching here in Chicago on October 25th, 2025, at the Kerrian Center for the Arts, which is located on Chicago's west side. So once again, I say thank you on behalf of Chalms ManyHealth Foundation and the MediHelps LL. I want to actually begin by asking you if you can give us a brief background on your work that and your reason why you believe that this summit is something that we should have in our community.

SPEAKER_00: 0:52

Yes, I I have for the past uh 22, 23 years, I've been uh doing work, my team and I have been doing work across the country going to what is sometimes called a disease hotspot. So those are areas that have disparately high rates of diseases or disparately poor outcomes. And uh what I found is a lot of information does not get down to certain communities. So people are just unaware of what a lot of diseases and conditions look like. They're unaware of how important it is to um know family history of disease, to know where the there are local resources. Uh, folks don't understand how important it is to get regular checkups and so forth. So, what you're doing through your podcast and what you're doing with this upcoming symposium is very important because you're bringing the information to the people. And that is what's needed because there's a there's a book, there's a quote, a scripture in the book of Hosea that says, My people suffer from a lack of suffer from a lack of knowledge. And a lot of people do not understand that what's going on in their body, it could be or will manifest as a serious disease, uh, nor do they understand how important it is to prevent and easy it is to present prevent a lot of diseases. So by you bringing the information to the people with using the right messengers and sharing information in a way that people understand, what you're doing is extremely important. And we, my team and I have been doing that, something similar, literally across the country since 2005 or six, we started.

SPEAKER_01: 2:36

Okay, thank you so much for that. And I do want to ask you, my first question to you today is going to be why do you think so many health conditions go undiagnosed or misdiagnosed, especially in our community? I mean, it happens across the board, but it seems to be happening more so in marginalized and underresourced communities that are already hurting. So why do you think that's a reason?

SPEAKER_00: 3:02

Well, first of all, I just want to make sure I am not a medical professional. Um, what I do what I do as a passion, but I'm not a physician, I'm not a nurse practitioner or a physician's assistant. So I just want or medical technician, so I just want to make sure that everybody understands that. Um so there are a couple of reasons. There are there are many reasons, but I'm gonna focus on two different silos. One is from the physician, healthcare industry side, and one is from the our side, right? So from the healthcare provider physician side, a lot of diseases and conditions, the symptoms are very, very similar, right? So doctors and and nurses are trained when they see a symptom to think of the most common causes, right? But there are some symptoms that are quite common for a wide variety of diseases. So uh that's one is they often attribute the symptoms to something that's much more common. On the our side, a lot of us don't realize that a lot of diseases and conditions won't have symptoms until it's very, very late in the disease. So by the time we show up to the physician, it's because we have a complication of something like type 2 diabetes or high blood pressure or high, you know, elevated lipid protein A. So people are shocked when they say, I didn't, you know, I didn't know I had this, or I didn't know that's what that was, or I thought I was just getting older. So um, so it's a problem on both sides. One is by the time people show up to the physician, the symptoms are uh they they you know, symptoms of very different diseases, like from lupus to type 2 diabetes complications, they may look some of them may look similar. And number two, on our side, and I like to focus, Sandra, on what we can do, we aren't aware of what a lot of these things feel like, and we just don't know what's going on, and we attribute it to a lot of things to I'm just getting older. That's that's what that is. So that's so that's one part of the answer. There's a two-pronged attack. There are many others. Lack of access to primary care, lack of access to subspecialists, so forth. So that that's a major, that's a major problem, right? You you if if you don't have access to a heart failure cardiologist, you don't have an access to uh immunologists, uh a rheumatologist, they're experts in in you know specific categories of disease, so they pick it up right away. A lot of non-subspecialists will not pick something up right away. So a lot of early warning signs are are missed. The last one, so there's the healthcare provider issues, and then our what we can do. And the last one, because of a lot of our experiences with physicians, nurses, and so forth, a lot of us have had, and I've done this work across the country for for years. So I'm talking about from Houston to South Central Los Angeles to West Baltimore to West Philadelphia to Cleveland to central Brooklyn, Miami. You hear the you hear the same things many different times, and that is there's a lack of trust. That we have a lack of trust towards physicians and healthcare industry and some teaching hospitals because of how we get treated sometimes when we get there. So what happens is, Sandra, a lot of us, because of that, a lot of us will wait until it's really late. And then by the time we get diagnosed, it's you know, we're we're in stage three or stage four. So I hope that was clear. There are a lot of different, it's there's not one simple answer. There's a there are a lot of different um aspects to this, but I like to focus on let's talk about what we can do, and there are things that we can do to help prevent a lot of the diseases and conditions that that uh impact us more than any anyone else. Does that did I answer that?

SPEAKER_01: 7:16

Yes, and you know what, and I thank you so much for saying that because you are right. It a lot of it depends on us. But if we're not educated on what we could be doing and what we should be looking for, and we don't and we don't think, okay, well, if I have a headache and I have the same headache for 10 days, when I go to the doctor, he shouldn't just be giving me a prescription for some medicine. That's right. He should be actually saying, Let me take a look at what's really going on with you so that we can actually help you so that those undiagnosed and those misdiagnoses, we can start cutting them down. So that's one of the main reasons for me saying, Let's do this unseen health condition, because I've come, I've lost sisters, two new sisters, to conditions that if they were educated, they you know, chances are they could have fought back. But because they weren't and because they were being gaslighted out of their health care, out of their health care, you know, that they're no longer here with us. So thank you so much for bringing that up. It's a hands-on-deck approach. Absolutely. Absolutely. So thank you so much for bringing that up. Now, I do want to ask you in your doing your research and doing your work, what have you found have been the three of the most misdiagnosed and undiagnosed conditions that we in our community have actually been challenged with or been diagnosed with?

SPEAKER_00: 8:49

Three of the most misdiagnosed. So let me uh this is how I think, so I apologize. Let's talk about the common and then some not so common.

SPEAKER_01: 9:00

Okay. Okay.

SPEAKER_00: 9:02

Uh I have to go with the ones that people just don't think are serious. Uh, so let's do uh common, undiagnosed, high blood pressure, high lipoprotein A, which is a high colour, you know, form of high cholesterol, and high blood sugar. Those are undiagnosed only because we're not going to get checked for them. All right, does it make sense? So it's not like physicians don't know what I mean. They do, they they they put a cuff on you, they'll diagnose it, right? The the blood, the blood pressure. They measure your hemoglobin A1C or your fasting blood sugar, they could tell pretty quickly if you have insulin resistance and type 2 diabetes. So those are undiagnosed because we're not going to get checked. And a big reason that I've heard that people are not getting checked for those is because they don't have symptoms. I used to work with, I was gonna say the name of a major advocacy group. And I used to get very upset when they put symptoms of this condition up everywhere. You'd see posters, and I'd get mad, I would want to rip them down, even though I was on the board there, because like most the most people don't feel those. So they think they don't have them, so they don't get diagnosed. Uh uh, many studies will show, Sandra, for let's say, high blood sugar for type 2 diabetes. When we talk to physicians in again, uh South Central Los Angeles, third ward, fifth ward of um uh Houston, South Part of Dallas, you hear them saying almost a third of the people that I treat with type 2 diabetes didn't know they had type 2 diabetes until they had a complication, which means they've had it for a very long time, right? And so these undiagnosed common diseases are can be deadly because they lead to earlier heart attack, strokes, and so forth and so on, losing your you know, lower leg limb amputation, these are serious things. So, as far as undiagnosed, common dose, the cardiovasculars, those are the by far and away heart diseases, those are the most common and they're very deadly, and they and African Americans specifically and Latinos, Hispanic Latinos are more likely to have those than any other ethnicity. Um misdiagnosed. So those, let's say those are more or less common. Um, sarcoidois, sarcoidosis and systemic lupus get misdiagnosed often and undiagnosed for quite some time because again, two-pronged attack. We don't know what those symptoms are, we're not familiar with those diseases as a people, and then physics, those they're not, they don't think of when they see those symptoms, um, you know, like uh joint pain and and and um shortness of breath and and and uh fatigue. Well, almost everybody has those, right? So so they don't think they're they're trained, and I'm gonna use an old adage, I don't know if it's still used, but it's when you hear hoof prints, when you hear hoof beats coming down the hall, when you hear something cantering down the hall, don't think it's a zebra, think it's a horse. In other words, don't think of some rare esoteric disease. Think of what's most common in your patient population, right? Because they're they they get the information from the patient, and then they think, you know, with all of their training and as brilliant as they are, they think, okay, it's probably this, and it's probably not that serious. So let me, you know, let me let me push towards the more common. And a lot of times, physicians will tell you, nurses will tell you, they don't, with lifestyle modifications, people push back. You know, change your diet, get them, be more physically active. So it's not like they write prescriptions because they're lazy or because they are um in cahoots with some you know pharmaceutical company. It's you know, you tell folks to change their diet and drink less sugary beverages or be more active, and a lot of folks don't. They just don't do it. All right. So I'm just gonna prescribe this pill. So um systemic lupus and and and sarcoidosis look like much more common diseases and conditions. So that's misdiagnosed and underdiagnosed often. And those two often they occur more in African Americans than any others. So any other ethnicity. So again, that could be deadly. The rare, the rare, and I hope I'm not talking in circles like the more rare side would be heredit, something like hereditary amyloidosis cardiomyopathy, which is where you're gonna have uh Art Still and his wife, Liz, do a presentation at your symposium. So that one is especially nefarious, I'd say, because that one, the symptoms are very different and they occur over 15 or 20 years. And the symptoms look, you know, like I said with systemic lupus and sarcoidosis, the symptoms look like much, much, much more common diseases and conditions. And they don't all happen at the same time. Usually, sometimes they do, some you know, usually they don't, but they happen over 15, 20 years, they they bounce around. So it they masquerade literally as quote, old age, arthritis, congestive heart failure, type 2 diabetes complications, something like that. So many doctors, and our and Liz will tell you their compelling story, but many doctors will not put together, look at these 15 different symptoms, and they range from bilateral carpal tunnel or carpal tunnel in one hand, and then diarrhea, and then comes and then constipation, and then you know back pain, and then fingers are tingling. And this is happening over years, and it's all due to amyloid deposits literally getting in body spaces. But a lot of doctors, you know, non-amyloid specialists are not gonna, I mean, their primary care, they're not gonna think it's this rare disease. So that that one's a big one. And Art and Liz are gonna tell a great story about, well, it's not a great story, but a story uh which demonstrates how it can, you know, a rare disease can hide itself and and lead to misdiagnosis because the physicians aren't aware and the you know, frontline primary care nurse practitioners in in clinics aren't aware of all the symptoms, what they look like. And then certainly the people aren't aware. So that's why it's important. It always comes back to us. It's important to for you to do what you're doing, it's important for you to bring the information to the people, because if people are aware of what these symptoms are, they can say, look, I have this, or I think I have this, and this is why I believe so. Look at these symptoms, I have those symptoms. And that will prompt physicians to say, okay, I hadn't considered that. I just thought it was old age and arthritis. But now that you bring it up, you did have some of those symptoms eight to ten years ago. So let's let's see if we can get you screened. So those are the you know, the the more common, like a sarcoidosis or a lupus, the very common, like type 2 diabetes and all those heart, and then heart diseases, and then the rarer side, um uh transthyrectin amyloid cardiomyopathy, that are very, very the consequences of those getting diagnosed very late are very severe.

SPEAKER_01: 17:11

Thank you so much for that. And you know, on a personal note, my oldest sister passed away from amylosis. Uh she was tired. She went to a doctor that wasn't a cardiac doctor. She went to a regular primary care doctor who just kept telling her, oh, it's nothing, it's nothing, it's nothing, until it got so far, you know, progressed so far that they literally couldn't do anything to help her. And they sent her to a clinical trial, but because she was at the stage that she was, unfortunately, I lost her while she was on the operating table.

SPEAKER_00: 17:50

Oh, goodness.

SPEAKER_01: 17:50

So amyloidosis is one of those conditions that go so often misdiagnosed or undiagnosed. And it wasn't until her funeral that we were, you know, my niece was told that, you know what, your mother was always kind of, you know, tired, even in school, in elementary school. So this was something that had actually been a part of her. And when my mom found out what was wrong with her, my mother was like, Well, where do we get that? Where I don't know where she got.

SPEAKER_00: 18:18

Yeah, where'd that come from?

SPEAKER_01: 18:20

And I told her, I told my mom, I said, Mom, how do you know that? Because then nobody was talking about health. Nobody was talking about family health. Now we have tools to help us, and now we have, you know, symposiums and summits to get the word out, like, hey, you know what? It might not just be, you know, a simple cardiac problem. It might be something that they need to be looking deeper into. So I thank you so much for telling that story. And you are correct. Art is going to tell his personal story, his personal lived story. But yes, I so resonate with him because I know what he, you know, I don't know every day what he goes through, but I know because I know you know what my sister had to go through before they diagnosed her and told her what was going on with her. So thank you for that. And I do know that I said I was gonna let you go. So if you have like another three minutes, I would love to ask you a final question so that we can wrap this up. You have time.

SPEAKER_00: 19:20

I do. My my next one I pushed out to uh 40 minutes after the hour. So I've got another eight, nine minutes.

SPEAKER_01: 19:27

Okay, so my next question is this if you could change anything in the healthcare system that had to do with undiagnosed and misdiagnosed and how they're done, is there one thing that you would change that you would say, hey, you know what, we've been doing this like this for so long, why don't we try doing it this other way so that we can actually, you know, not so much eliminate, I would love to eliminate it, but I know that's that that's almost impossible. But so that we could see a decrease in the number of people that are presenting in our marginalized communities with these undiagnosed or misdiagnosed conditions.

SPEAKER_00: 20:04

One thing. Um I would say bringing the education and the services to the people. I would say, I would say that. Because I I'm I'm big on, let's talk about what we can do in now to the next six months. So I'm not big on talking about how we have to change the federal government in the way that that works and the state health department how that works. I'm not big on that because I like to go and say, what I want to know what we can do or what people like you, Sandra, can do rather than waiting for some, you know, or pushing for a policy change, which is needed, right? But a policy change is not going to happen next week. What can happen next week is you can bring experts to the people. You could bring screening to the people, you could bring education to the people. Because again, that that verse in in Hosea, we suffer because we don't know. And part of the reason we don't know is that we don't have there's some barriers that exist in our community that aren't in others. Like we don't, a lot of us work at jobs where we can't take time off of work repeatedly for you know screenings and preventions and testing. We we can't, or this the the places to be screened and tested are not in close proximity. We gotta get on a train or you know, drive somewhere and they're not right, they're close by. They're not close by. When you look at the healthcare information that's available, um, first of all, you have to find it. And then you have to realize when you look at some of this information, it is not written in plain language. It's written as if everybody's a third-year medical student. And I have reaves of current evidence of that. It's written because it's written by people with expertise and health, expertise in health care, apparently for people that have expertise in health care. Like, well, they already know what to do. Where where is the information for people who have either a low level of regular literacy or health literacy? Like they where's the stuff that uh people that don't understand healthcare and medicine and how their body works, where's that information? And the answer is there usually isn't any. So people don't know. So what can you do? You can we can do what you're doing. We can bring people like Art and Liz still, we can bring physicians, we can bring experts like yourself and those that you're gonna have. You can bring them to the people, you can bring screening, you could bring mobile vans to the to the people, you can you can work with community health workers and promotoras in in Spanish speaking uh neighbors, uh health ministries, um, retail pharmacists, medical students, nurses, bring them to the community and then and then share the information in a way people understand, and then in a venue where they're comfortable. So don't say come to such and such teaching hospital and listen to the head of nephrology talk over your heads. It's come to such and such community center or come to this event or come to this church and hear people talk about living life with this disease or more importantly, preventing diseases and conditions. So I would change that. It's I would do what you're doing, and that is bring the information and the screening to the people in a way that they understand and then navigate them. So I call it the education and the navigation. It's educate people and then say, and here is where you go. Don't leave this room because around the corner here with all these tables are local hospitals and advocacy groups and even pharmaceutical industry folks that have plain language information. That's that's like this is where you go. These groups, especially the hot the local hospitals and stuff, they'll tell you what to do. If this sounds like you, or if you want to be screened, go here. We brought them to you, so we're taking a barrier away. So I would say it's that. It's it's doing what you're doing, bringing in the sources, resources, providers, position, and education to the people in the community. That's what I would do.

SPEAKER_01: 24:42

I thank you so much for that. And I take and I thank you for taking the time out of your busy schedule to come to us to let us know what we need to know, like plain language, what we need to know as a community so that we can push ahead. We can't wait for the government. Are they gonna fix it? Maybe, but we could fix it for sure, right? If we just get busy, if we stop talking and we get the work in, we can actually fix this. I do want to say this before we close out of this video session. Once again, this is not, I am not a medical doctor. I'm just someone who truly cares about our community. Arnie is not a medical doctor. He's just someone that truly cares about our community and what's going on in the community and how we can take control over it and do what we must do to get us to the next level. I thank you. I thank Foma Health for taking the time to actually become one of our partners as we kick off this event here in Chicago. And I look forward to continued partnerships with you so that together we can grow because when we grow and collaborate, guess what happens to our community? Yep. Right? So, with that being said, I'm gonna go ahead and close out this session. And please, everyone, remember what I always say be kind always. You never know what you're going to do and how you'll touch someone just by being kind. Thank you, Ernie, so much. I certainly appreciate you.

SPEAKER_00: 26:21

My pleasure. All right, God bless. Thank you.