Speaker 2 00:00:05 Hi, this is Disability and Progress. We bring you insights into ideas about and discussions on disability topics. My name is Sam. I'm the host of this show. Thank you so much for tuning in. This week we are bringing you a prerecorded version. We are speaking with McKayla mc Calhoun, and McKayla is from a company called Ocul Lab. She will be discussing the art of facial prosthetics. You can hopefully join us for this interesting, um, show. And after that, we'll be speaking with Rita, um, Baron, Faust, and Rita is speaking about autoimmune diseases. She'll be talking about her authored book, the Autoimmune Connection. Please stick with us and we'll be back with new exciting shows next
Speaker 1 00:00:53 Week.
Speaker 2 00:01:06 And good evening, thank you for joining Disabled and Proud, where we bring you insights into ideas about and discussions on disability topics. My name is Sam and I'm the host of this show. Thank you so much for tuning in. And we have Charlene doll, my research assistant in here, and also McKayla Calhoun. Hello ladies.
Speaker 3 00:01:24 Hello.
Speaker 2 00:01:25 Um, so McKayla is apla. Oh, Alast. Oh, Alast, right? Yes. Oh my gosh. Perfect. It only took me two times. Oh, just pitiful. Okay. And she has, she works for a couple different companies, but tonight we're gonna just talk about the art of, of facial prosthetics. Yes. Um, which will be exciting. And thank you very much for tuning in. Um, everybody. And I want to start by asking you to, Michaela, to just give a little history about yourself and, um, you know, what is an APLs? Tologist <laugh>. Yes. Most people I don't think even have heard of that term. No, absolutely. Let's see you say that five times. No, I'm just kidding.
Speaker 3 00:02:20 Well, I've had a lot of practice.
Speaker 2 00:02:21 Yeah, that's kind of true. That too. You would cheat. Okay. All right. Moving on. Let's go ahead and tell
Speaker 3 00:02:26 Us. All right. Well, thank you so much for having me on. This is great. Um, I went to school for, um, facial prosthetics. So I took the route of, um, of a graduate program at the University of Illinois at Chicago. And that's a, a program that specializes in various kinds of medical art. But my focus was on anaology, which is, um, different kinds of facial prosthetics and that it's a, a combination of art and science that you have to have a strong background in human anatomy and material sciences. And then you combine that with artistry, sculpting, color painting. So, um, I was really lucky to be able to find a field where I could combine all those interests. And today, so I've been working here in Minnesota for five years with Gillian Duncan, who started, um, the, the company that I work for as Graphica Medica. Mm-hmm. <affirmative>. And she's been doing that this work for about 30 years in this area. And then recently we've started collaborating with OCU Labs and, um, making ocular prosthesis
Speaker 2 00:03:46 Prosthetic eyes,
Speaker 3 00:03:47 In other words, yes. Prosthetic eyes.
Speaker 2 00:03:48 Yes. Fine. So there's apparently, um, I, I know of the, of course of about the prosthetic eye mm-hmm. <affirmative>, but I didn't even think about other facial prosthetics. Um, and there are several and Right. So how many are there? And can you give us kind of a quick list of what most of them are? Sure.
Speaker 3 00:04:11 Yeah. Many people have heard of a, a prosthetic eye, or they're, they're often called glass eyes, although they're no longer made of class most often, although there, there are some places in Europe that you can still get a glass eye. Really? Yeah. Yeah. In Germany, they, um, that's where they really perfected the technique of blown glass,
Speaker 2 00:04:28 Really. And what would be the point of why would you want a glass
Speaker 3 00:04:31 Eye? Um, nowadays it's sort of a boutique thing. They're, they're very beautiful. They have a luster and a look that, um, no
Speaker 2 00:04:38 Other eye can
Speaker 3 00:04:39 Delete, really can achieve. Wow. But, um, there's, they can't be fit and customized, um, as far as the fit inside the socket in the same way that a pr, uh, plastic eye can. So, and they can't be polished, so they don't last as long. Um, but it's still kind of just a boutique specialty thing. Wow. They're really, really beautiful and the process is really fascinating. Um,
Speaker 2 00:05:01 Okay, we'll, we'll come back to that, but go ahead and give it to <laugh>. So
Speaker 3 00:05:04 We, um, so prosthetic eyes oculars are the, the most common thing that we make. And then we make prosthetic ears, noses and eyes, um, when somebody's missing more than just their eyeball. So if they're missing the, the eyelids part of the brow and the tissue around the eye mm-hmm. <affirmative>. Um, and then there's combinations of those there. There's mid facial prosthesis and hemi facial and upper facial. So there's different categories that, that, um, encompass any combination of anatomy that might be missing.
Speaker 2 00:05:40 Excellent. Yeah. Well, this is a fascinating thing to me. Um, so let's, let's talk about the eyes. Can you talk a little bit about the prosthetic? Uh, how has it changed through history? Give a little bit of a idea of how they're made.
Speaker 3 00:06:02 Sure. Um, you can trace prosthesis back to like ancient Egypt and Persia. So there's a really long history of prosthetics. Um, they were made originally out of clay or out of gold and other metals. Wow. And then painted with enamel. Um, and they were made out of leather wood paper,
Speaker 2 00:06:31 Uncomfortable.
Speaker 3 00:06:32 Yeah. And then there was a, there were a lot of prosthesis made out of metal, and they were really beautiful. Um, and then painted with enamel. And those were made for quite some time until, um, materials started to develop artificial materials. Uhhuh, <affirmative> like Vulcan night and different, um, forms of rubber. And they didn't always last super long, um, but they were a little more comfortable than metal. Mm-hmm. <affirmative>. And then
Speaker 2 00:07:01 I would think metal would get pretty cold.
Speaker 3 00:07:03 Yeah.
Speaker 2 00:07:04 Especially here in Minnesota, right? Yeah. Yeah.
Speaker 3 00:07:07 Right. And, um, and then glass was used for oculars. And then up until World War ii, uh, we couldn't get, the glass that we used for eyes was from Germany, so we couldn't import that soda glass any longer. Oh. So the US Dental Core, um, in the, uh, at the, of the US Army mm-hmm. <affirmative>, they were tasked with developing a method for making plastic eyes. And that's essentially the same method that we use today. It's, um, acrylic, plastic. And, um, and then as silicones and different rubbers have developed, there are medical grade silicones that we use that are at, at a range from a gel-like softness to a plastic like hardness. And we can use them for different reasons, for different indications.
Speaker 2 00:08:05 Right. Cuz you're talking about like, if you have to do the brow or lid, what would you do that out of?
Speaker 3 00:08:11 So the process for creating the prosthesis begins, um, different, different practitioners have different techniques. I use wax, so I sculpt the form of the brow or the cheek or the nose, whatever we're creating. Okay. Out of wax. And then fit it to the patient and they have the opportunity to look at it and have family members present to look at it and make sure that it, it fulfills what they want out of the nose or the eye. And then, um, a mold is made around that wax with dental stone, with plaster mm-hmm. <affirmative> mm-hmm. <affirmative>. And then the wax is melted out of the mold and the silicone is painted into the mold. And we, we color the silicone with custom pigments so it matches the patient's skin. Uhhuh, <affirmative>. And you might, we might mix three to seven colors depending on how complex the, the prosthesis is and how much variation and tone there is and the patient's skin. And then that, that silicone is painted into the mold and layered in and then baked in the oven.
Speaker 2 00:09:23 So when it's done mm-hmm. <affirmative>, what does it feel like?
Speaker 3 00:09:27 The, the silicone that I use most often, it feels like a, a soft rubber. So it has some give when you squeeze it mm-hmm. <affirmative>, um, it's a 12 derometer on the scale of hardness <laugh>. So if a tabletop is a hundred mm-hmm. <affirmative>, and a one is like a, a gel that would fall apart if you squeezed it.
Speaker 2 00:09:53 Ah, so the, is the idea that they're trying to get it to feel like skin?
Speaker 3 00:09:58 Yeah. And there's, there's a range of materials available. So the more there's a, there are reasons that you would use a softer silicone mm-hmm. <affirmative> that maybe felt a little more like skin. Um, particularly if you're working on an area with a lot of movement, um, and you wanna accommodate for that movement and for the prosthesis to, to flex with the skin. But then that prosthesis may not last as long because the softer the material is, generally speaking, the, the more susceptible it is to tearing or breaking down. So the harder, there's materials that we might compromise and go a little bit harder. Right. With the firmness, but then it'll last longer for the patient.
Speaker 2 00:10:40 How long does an average prosthetic last and what makes them break down?
Speaker 3 00:10:45 Yeah, that's a pretty tricky question. Um, of a prosthetic eye, like we kind of discussed that can last 20 years. Um, the fit may change over time and the color of your eye, of your natural eye that the prosthesis is matching may change mm-hmm. <affirmative>. But the plastic eye itself is quite durable.
Speaker 2 00:11:08 How does the color change? Just the paint wears.
Speaker 3 00:11:11 N i I would say the color of your natural eye is more likely to change.
Speaker 2 00:11:14 Oh, oh, oh, gotcha.
Speaker 3 00:11:15 Yep. Just normal aging processes and, um, the color of the white part of your eye certainly changes. Mm-hmm. <affirmative>, more yellowing might show up, the vascularization gets a little more intense, and then the clear layer over the front of your eye can start to get a little foggy. So the eye kind of softens up. It lightens up a little.
Speaker 2 00:11:35 And is this because of body whatevers in your body that wear and tear on the eye, on the material?
Speaker 3 00:11:43 Well, the, the color of a prosthesis can change based on Yeah. The chemicals in your tissue or it can, it can sort of start to yellow. Like, um, it also though will fade based on just exposure to sunlight. Mm-hmm. <affirmative>. So with a, with a silicone prosthesis with a nose or with an ear, we're, we're typically seeing that after maybe three years, the patient comes back and the color looks faded. Ah. So one ear looks like, it's like it's a little more yellow, a little more light, and the other ear still has that vibrant
Speaker 2 00:12:23 Pink. And so what do you do with that?
Speaker 3 00:12:25 It depends. So we can touch up the color on the surface of a prosthesis, of a silicone prosthesis, um, and seal that color in and sort of rejuvenate the, the look of the prosthesis mm-hmm. <affirmative>, but that can only be done so many times before the silicone really starts to absorb skin oil and it starts to break down. Little tears Right. Start to happen. And so we generally are replacing a prosthesis after three to five years.
Speaker 2 00:12:54 Ah, okay. I need to take just a short break to let people know you're tuned to K ffa. I 90.3 fm, Minneapolis 1 0 6 0.7 FM St. Paul
[email protected]. G Charlene Doll is in the studio with me, who is my research assistant. And we're speaking with Michaela Calhoun. And McKayla is a Anna Tologist, who works for, um, has her own company, or I'm sorry, I forgot the company again that you do.
Speaker 3 00:13:22 Yep. I work for Graphic America
Speaker 2 00:13:24 Graphic Medica, and she works for Ocular Ocul lab. And there's one other one probably. Right? Or just those two? Just those two. Okay. Um, so is it painful to get a prosthetic, uh, facial of that type
Speaker 3 00:13:38 Generally speaking? No. Um, when a patient is ready, when a patient has gone through the, the treatment, the medical treatment that they need in order to resolve, um, any surgical issues or any issues with pain or sensitivity mm-hmm. <affirmative>, um, they, that's all done prior to them coming to see us. Okay. So, for example, if a, if a patient needs a prosthetic nose because they've had their nose removed, maybe there was a tumor and then the tumor tissue had to be removed and then resulting, most of their nose was removed. Wow. Um, they would, we would wait until they were fully healed so that there wasn't, um, open an open wound or any very sensitive tissue. And then all the materials we use are very gentle and their medical grade, we use a lot of dental materials mm-hmm. <affirmative>, because there's a lot of overlap in what is being done with dental prosthetics and what we are doing. So many of the materials were used are designed to be, um, to be used in the mouth. So they're very gentle and safe. And
Speaker 2 00:14:46 So would this mean then, when they're, you're doing a prosthetic, is there any feeling?
Speaker 3 00:14:52 Yeah. And that can vary a lot, particularly with patients who have had surgery and they've had part of their anatomy removed. There may be nerves that were, um, cut in the process mm-hmm. <affirmative>. So sometimes there's very little sensitivity in the area that we're working on, but sometimes they're, they still have full sensation and they can feel the silicone against their skin.
Speaker 2 00:15:16 Ah, okay. So how real do they look?
Speaker 3 00:15:23 They look quite real. Um, the, we always, we always have the patient present when we're doing the artistic work. Um, so if we're making one ocular prosthesis for a patient, we have them, we're matching their, their other eye, their living eye. And, um, that's where a lot of the artistic training comes in. The, the, um, custom coloring and sculpting so that we can achieve the closest match possible. It's never gonna be exactly like their living skin or their living eye. Right. But, um, but we can get it very, very close
Speaker 2 00:16:02 And you can make people not know that they have prosthetics.
Speaker 3 00:16:07 Yeah. The goal is that you, the, the, the person wearing a prosthesis can go about their day-to-day life. They could go to the grocery store and, and go through the whole checkout lane and interact with people and nobody would really notice.
Speaker 2 00:16:24 So I'm gonna go back to the glass eye cuz now you have me intrigued. Okay. Um, cuz you talked about how beautiful they are. What makes them so special? Like they must look extra real, or what, what is it?
Speaker 3 00:16:37 Yeah, there's a, there's a luster and a translucency to the glass that we can get quite close with paint and acrylic, but there's just something about them that they, they have that depth and that layering that, um, it really just kind of glows
Speaker 2 00:16:55 Except
Speaker 3 00:16:55 For certain eye colors, it's, it's hard to achieve that with
Speaker 2 00:16:58 Paint. And they do it with blown glass. Yes. So they can't really fit How close is the fit then? Does, does that in itself give it away?
Speaker 3 00:17:09 It could, although the people who make them are so specialized and they've been, the training is very extensive and they get really good at, at being able to examine a, an eye socket just visually and then match that with a shape that will, that will achieve a good fit and a good gaze.
Speaker 2 00:17:31 So do any of these prosthetics need upkeep?
Speaker 3 00:17:35 Yes. Absolutely.
Speaker 2 00:17:37 How, how and what and
Speaker 3 00:17:39 Yeah. The, the general recommendation for an ocular prosthesis is that you should get it polished once a year. Um, the acrylic plastic can scratch mm-hmm. <affirmative> and there can, um, there could be protein deposits that sort of build up on the eye from, from the proteins in your, in your, um,
Speaker 2 00:18:03 Body in your
Speaker 3 00:18:04 Yep. Yeah. Yeah. And in the fluid in your eye mm-hmm. <affirmative>. So that can become irritating to your socket. And then that's just something that we wanna be able to check up on and make sure that it's as comfortable as it can be. So we generally recommend a polish once a year for an eye mm-hmm. <affirmative>. And then that's a good way for us to interact with you and just make sure we know that the eye is meeting your needs. That it's still looking, it's still matching and it's still looking forward. It's not looking up or to the left. Um, and when, when we notice that there's a change, then we can just remake the eye.
Speaker 2 00:18:43 So prosthetics or anything done medically is not super cheap. How does insurance handle this in general?
Speaker 3 00:18:52 Insurance is probably the, the least exciting part of the, it's definitely the least exciting part of the whole process. Um, but we have a pretty good team. It's a, everything is submitted electronically. Mm-hmm. <affirmative> and the prosthesis that we make are considered durable medical equipment. Okay. So that's a category of, um, of coding that, that, um, is usually covered by most health insurances. But it just depends, the level at which it's covered is different for every carrier, every plan. So it's just a little bit of a, a new process with every patient. Which type of paperwork is required? How many phone calls you make, how many faxes? Um, so there's, there's quite a bit of paperwork involved, but typically we have success getting insurance companies to, to cover at least part of the prosthesis.
Speaker 2 00:19:56 Now the ocularist actually handles pouring the eye or, or manually making the eye mm-hmm. <affirmative>. But what about all these other artificial parts? And you do them as a company?
Speaker 3 00:20:09 Yeah. Every, all of the lab work and all of the technical work is done at our office. Okay. So the, the ocularist sits with the patient and designs the eye and fits the eye, and then he also takes it back to the lab and he pours the mold and he polishes the eyes. And, um, we make all the molds and do all of the processing in our lab at, at our office.
Speaker 2 00:20:37 So since, um, you, you do the other, um,
Speaker 3 00:20:44 Other facial prosthetics
Speaker 2 00:20:46 Mm-hmm. <affirmative> prosthesis, you kind of have, uh, an idea on how it's all done. But the prosthetics, we talked a little about that and there actually are different ways of making them mm-hmm. <affirmative>, do you wanna go into that a little bit?
Speaker 3 00:21:01 Yeah. The, um, the process of designing the, the, the process of fitting and designing the, the prosthesis mm-hmm.
Speaker 2 00:21:12 <affirmative>, is that what you're,
Speaker 3 00:21:13 Yes. Yeah. So there's, there's a lot of different techniques that people use to design and to fit a prosthesis. Um, with an ocular specifically, there are different impression techniques that can be used. So we typically start by taking an impression of the socket. So there's an alternate material, it's like a, a powder that you mix with water, and then it sets up into a gel and that material is injected into the eye socket. And then that records the negative form of the shape of the eye socket. Okay. So that gives us a really great place to start knowing the shape that the eye should be. And then that, um, that shape is developed into a wax model mm-hmm. <affirmative>. And then it's slowly shaped and carved away and smoothed out and rounded to, and, and it, we try it in several times and then until we have it looking just like the other side and balanced mm-hmm. <affirmative> and comfortable. And then from there that the, a mold is made of that shape. And, um, there are other techniques for, for fitting an eye. There are some shells and shapes that are already created that we can, we can start with a shell, um, and then build off of that without taking an impression.
Speaker 2 00:22:45 Are there reasons that somebody would be ineligible or told they shouldn't have a prosthetic?
Speaker 3 00:22:53 Yeah, they're, um, often we make prosthetics over a living eye. Mm-hmm. <affirmative>. So we have many patients who still have their living eye, but they don't have vision in that eye mm-hmm. <affirmative>. And it's, it's been affected either by a disease or by an accident. And so it, once the eye starts to lose some volume Right. And there's enough space, we can make a shell to cover that eye. So sometimes we see people who come in for a consultation and they, they're, they still have too much volume and too much sensitivity mm-hmm. <affirmative>, so they just can't wear an eye. It wouldn't be comfortable enough.
Speaker 2 00:23:37 What about the other prosthesis in their face? Any other facial prosthetics?
Speaker 3 00:23:41 Yeah, there are, there are certainly times when we can't, if somebody has had some surgery mm-hmm. <affirmative>, um, and they've had a, maybe a skin graft mm-hmm. <affirmative> from their leg to fill in what was removed. Right. Sometimes there's some bulk to that tissue and there's really not, we can't really add anything onto that to make it look more natural. So there are times when somebody comes and maybe they've, they're missing their whole eye and their lids mm-hmm. <affirmative>, but it's all filled in with tissue. Yeah. And there's not really space for us to make a prosthesis.
Speaker 2 00:24:20 Ah. How does one go to shop around for an Oculus? They're just a prosthetic person who, right. And a tologist.
Speaker 3 00:24:31 Yeah. There are, um, a couple of helpful websites. So Ocularistry is, um, has a, an overseeing body, the American Society of Ocularists, Uhhuh <affirmative>. And they have a website, I think it's oculus.org granet. Ah, yeah. They, um, they have a link on their website that, to find an ocularist mm-hmm. <affirmative>. So that will direct you to a board certified ocularist in your area. And we have the same thing on our, um, anaology.org. Okay. We have a find an AAP plast tool and our, um, there are, there's a board certification, um, program for Alast Tology as well. And you can find a board certified Alast tologist, although there are very, very few of us really, it's harder to find. Really. Yeah. I think there are only, um, I think there are only 30 some board certified AAP plast.
Speaker 2 00:25:38 Are you saying there are non-board certified apostles? Sure.
Speaker 3 00:25:42 Yeah. You don't have to be certified to practice, particularly if you work in a large institution where you work with several physicians who do the, who oversee the work and do the billing. And then you don't have to be certified, you just have to have the right training.
Speaker 2 00:25:59 Ah, so what, so to, in order to contact you, where, where would they go your company?
Speaker 3 00:26:08 We, um, OCUL Labs does not yet have a website, but they're working on it. Um, but we have our offices in Bloomington mm-hmm. <affirmative> and, um, we, I have a website for Graphica Medica, which is www.graphicamedica.com and we have, um, our office in Bloomington, and then we're down in Rochester as well.
Speaker 2 00:26:34 Excellent. Um, so what, what would people, just give me some ideas of what people should ask when they, they, cuz I think people are like, I don't even know where to
Speaker 3 00:26:45 Start. Right, right. <laugh>, um, often we want to get an, get a sense from somebody what they want out of the prosthesis. Mm-hmm. <affirmative>. Um, we need patients to understand, particularly with when somebody has gone through a trauma, when they've been diagnosed with cancer mm-hmm. <affirmative> or, um, been involved in an accident,
Speaker 3 00:27:10 They're, they've experienced a great deal of trauma and we kind of come in at the end of the healing process mm-hmm. <affirmative>. And so we wanna make sure that everyone has realistic expectations, that they understand that, um, it can be a lot of work to have a prosthesis that you're gonna have to, it's something you're gonna have to take care of. Um, with, with an eye, it's a little less work. You can, the, the rule of thumb is that if it's not bothering you, you can just leave it alone, leave it in. Um, you don't have to take it out or use any special, um, drops or medications mm-hmm.
Speaker 2 00:27:50 <affirmative>.
Speaker 3 00:27:51 But there, you know, you need to understand that it's a, it's a long-term commitment. It will need to be adjusted and updated. Um, and then with something like an ear or a nose, it is a little bit more work. You have to take it off and clean it and clean your skin and it comes on and off. Typically, somebody doesn't sleep with their nose on. Oh,
Speaker 2 00:28:14 Really? Oh. Oh. So Ooh. That'd be an interesting date situation. <laugh>. Yeah. Yeah. You, you usually don't
Speaker 3 00:28:20 Reveal your prosthesis to someone until you're pretty serious.
Speaker 2 00:28:23 That's my next book. <laugh>. Yeah. <laugh>. There you go. Um, so what, what, how has this changed your life? This just what has this kind of given to you personally doing this type of job?
Speaker 3 00:28:35 Yeah. I'm, I'm extremely lucky to have this job. It's, it's, uh, number one, I love doing it. I get to, I get to create, um, sculptures and paintings. I get to be artistic. And, um, there's a lot of problem solving. And just every day is, is a completely new process. Um, and then you, I mean, it's, it's very rewarding, you know, that you're, you're working for a reason. Yeah. And you're, you're helping people. This
Speaker 2 00:29:07 Is K F E I 90.3, Minneapolis and K ffe i.org g My name is Sam, I'm the host of this show. We are speaking with Mikayla Calhoun and we will be later on in the program also speaking with Rita Barron Faust who'll be talking about her authored book. Good evening and thank you for joining Disabled and Proud, where we bring you insights into ideas about, and discussions on disability topics. My name is Sam and I'm the host of the show. Thanks so much for tuning in tonight. We have a, um, very important guest. And actually, I'm sorry, I'm trying to get my headphones. Ah, thank you. Thank you. Okay. Sorry. News Studio. We're not supposed to admit that. Are we <laugh>? But we have on a awesome guest. We have, um, Rita, uh, sorry, Rita. We have, um, Rita be
Speaker 4 00:30:39 Fo
Speaker 2 00:30:39 Fo fo thank you.
Speaker 4 00:30:41 Opera.
Speaker 2 00:30:42 Yes. Um, and you have, um, are gonna talk about autoimmune diseases and of course the book you've authored called The Autoimmune Connection. Hi.
Speaker 4 00:30:56 Hi. Good to be
Speaker 2 00:30:57 Here. Thank you. And thanks for your patience and I apologize. It's been a, a pretty crazy, uh, we've just gotten in the new studio. So, um, anyway, let's start out by talking a little bit about you and can you give us a little background about you and how did you become involved with the issues of autoimmune related diseases?
Speaker 4 00:31:22 Well, I'm a medical journalist. Mm-hmm. <affirmative>, uh, uh, I was attending, I think the first annual Congress on women's health in 1992. That goes way back. And I listened to a talk by Virginia Lad, who was the head of the venue, uh, fledgling. It was just beginning American Autoimmune Related Diseases Association or arta. And she talked about autoimmune diseases and how women had a hard time getting diagnosed because the symptoms were vague. Um, you know, you had joint pain, you had headaches. You, you were fatigued. And it was not, it was not something that sounded like a disease. Women didn't look sick, so they didn't have, they had a lot of trouble getting taken seriously by their doctors. And when she talked about how many women, 75% of those with autoimmune diseases were women, I hooked because I had already written several books on women's health and I was just kind of riveted by it. Um, so we had lunch and I started asking her questions and she said, do you wanna write a book
Speaker 2 00:32:38 <laugh>?
Speaker 4 00:32:40 I said, there's enough here for a book. So I, I really started researching then, and it took a number of years cuz I was involved in three, four other books at the time. But I kept amassing information and the more information I got, the more guy became mm-hmm. <affirmative>. I kept going to medical meetings and hearing about this, but the one thing that was really missing was the word autoimmune. Ah. People didn't say that. They said rheumatoid arthritis, they said lupus. They really didn't make the connections.
Speaker 2 00:33:18 So, and I'm sorry, I was gonna say, is there a quote, definition of autoimmune disease. What, what is one, what would you say a good definition? Well,
Speaker 4 00:33:27 The classic autoimmune disease is lupus of rheumatoid arthritis where the body basically turns on itself and attacks healthy tissue. And you're going, how is that possible? We have cells in the body that are trained to recognize us mm-hmm. <affirmative> and viruses or other invaders to our immune system mm-hmm. <affirmative>. But sometimes these cells get the wrong signal and they mistake tissue. That's ours like heart tissue or skin tissue as being alien. Mm-hmm. <affirmative>. And they go on the attack. That's a kind of very simplified definition, but that's really what happens. And what happens when they attack. They produce a lot of inflammation. And inflammation is actually part of the body's defense mechanism to try to heal. But it spirals out of control and the excess inflammation produces damages in healthy tissue. And that's really, uh, a capsule. Very, very, very basic Okay. Explanation of what's going on. And, um, I was intrigued that women had more than men. Yes.
Speaker 4 00:34:46 Uh, yes. So I looked at why, and it seems we've got better, we've got stronger immune system, <laugh>, anyone who who's married knows, you know, we are tough. You get a cold. Right. You get a cold, you get over it in a couple days, your husband is like, he's, he's suffering. You know, it takes them a while. We have much stronger immune systems at the same time. They're more reactive. So it's a double-edged sword. Right. It helps us get over a cold faster, but it's also hyperreactive and starts to recognize, you know, it starts to react to this inflammation and produces autoimmune diseases.
Speaker 2 00:35:30 Is there a count of how many autoimmune diseases there actually are?
Speaker 4 00:35:36 Estimates range from a hundred to like 80 to a hundred. Uh, maybe even more because we're just uncovering new ones. It, it's kind of like cancer. Cancer is, is a, uh, an umbrella term. Mm-hmm.
Speaker 2 00:35:50 <affirmative>,
Speaker 4 00:35:50 Yes. And autoimmunity is an umbrella term for many, many diseases and syndromes, which are collections of symptoms and size. Maybe they're not classified as a disease, but they're a syndrome. You know, you have a bunch of sym symptoms and collectively they become a syndrome. So there's a lot going on here. Um, estimates run 50 million Americans may have autoimmune diseases, and a majority of them are women. And the American Autoimmune Related Diseases Association has been lobbying for now 25 years to get recognition not only for the term autoimmunity, but to get funding for research. And they've been advocating on Capitol Hill, they've been educating doctors. It's, they've had a huge effort on this behalf. So when I started going to meetings, I rarely heard the word autoimmune. That was back in 2004. Mm-hmm.
Speaker 2 00:36:53 <affirmative>,
Speaker 4 00:36:54 Now I hear it all the time. Ah, go to the American College of Rheumatology meeting and people are talking about autoimmune diseases and that's very heartening. The problem is that arta, that's mm-hmm. <affirmative>, American Autoimmune Related Diseases Association's acronym. They've been lobbying for specialists. You can go to see a rheumatologist and he looks at your joints. You can go to see a neurologist and he looks at your brain, but there's no one person or one center that can look at it all.
Speaker 2 00:37:30 Yeah. That's an interesting thing.
Speaker 4 00:37:34 Um, so that, that's been their cause.
Speaker 2 00:37:37 If you had to to give like the top five autoimmune diseases, what would they be?
Speaker 4 00:37:44 Well, surprisingly, the most, we're talking about something different, like being stuck in cement. Mm-hmm. <affirmative>, you can't take one more step. You can't do every nice things like pick up a child, cook a meal. It's profound fatigue and it inter interferes with your life. And it's one of those symptoms that are hard to describe to a doctor. You know, they're looking for signs and symptoms. The signs are the outward things that you may have a rash, joint, redness or swelling, but symptoms are the things that women feel. And if, you know, they experience and that, and that becomes difficult for a lot of people to describe,
Speaker 2 00:38:33 Can you prevent an autoimmune disease.
Speaker 4 00:38:38 Um, that's the goal. What scientists now think is there's kind of a, a autoimmunity that precedes an actual disease. It's a level of inflammation of these so-called biomarkers, little chemical signs in the blood that may give a hint that something else is going on. So the goal, the hope is to be able to detect those and intervene early enough to prevent something from happening. Um, there are markers in rheumatoid arthritis mm-hmm. <affirmative> and in lupus that, that her parent years before the disease manifests itself. So the thinking is now, if they could intervene early enough in this process, they could prevent the disease and, and the, the bad things that it causes, like joint damage. Interesting. You know, organ damage.
Speaker 2 00:39:40 We need to,
Speaker 4 00:39:41 And at this point, the only disease you can really, really cure mm-hmm. <affirmative> is celiac disease is the one where the, the, uh, the gut reacts to a protein and wheat and other grains.
Speaker 2 00:39:56 And that would be by stop eating them. Stop eating it. Right. Yeah.
Speaker 4 00:39:59 <laugh>. Right. You stop eating it, the GI system can repair itself. So it's a very simple cure. Thyroid disease, you can give replacement thyroid hormones, but it as yet, it's really not possible to intervene early enough to head this off. Now they're trying, uh, there's a guy, he was a founder of Napster and Facebook. Mm-hmm. <affirmative>, um, I'm trying to find his name. Such Sean Parker. He's a founder of Napster and Facebook, and he has autoimmune disease in his family. His family members have Hashimotos thyroid thyroiditis. So last November he gave a gift 10 million from his foundation to establish a new research lab within the diabetes center at University of California San Francisco that's devoted to understanding autoimmunity in hopes of finding ways to intervene. And there are a number of other places around the country, uh, New York University among them who are researching these early signs and hopes of finding a way to intervene. We're not there yet.
Speaker 2 00:41:21 Ah, we need to take just a break to let everyone know you're tuned to disabled and proud. This is K F A I. My name is Sam Jasmine, I'm the host of the show. We're also in the studio with Charlene Doll, who's the research assistant. We're speaking with, um, Rita Baron, um, faus Fuse, I'm sorry, <laugh> Rita Barron faus. And she is the author of a book called The Autoimmune Connection. And she's discussing these different, um, autoimmune diseases. And it's, Rita, it's my understanding from, well, from one, from reading your book, which I didn't really realize, that if you have one autoimmune disease, you are actually at risk for getting another, or have a chance of being a risk for getting another. Why is this?
Speaker 4 00:42:07 Because many of them cluster together. There's an underlying lying cause for a lot of autoimmune diseases isn't that these inflammatory chemicals are cytokines. Mm-hmm. <affirmative>. So the same cytokines are involved in a lot of the different diseases. They're genetic, they can run in families. Now, that's not to say if your mother has thyroid disease, you're going to get if it doesn't work that way. But let's say your mother has thyroid disease. Your grandmother had rheumatoid arthritis and another relative had Crohn's disease. That's an autoimmune family. They cluster. And in fact, recognizing the clusters is, and making those connections is very important because when I, I have thyroid disease mm-hmm. <affirmative>, and I started losing my eyelashes and I went to a dermatologist and she goes, well, you have a little bit of alopecia, you know, that clusters with thyroid disease. And I almost fell off my chair. I had never heard the word clustered. Ah. And in the book, in each chapter, there's a list in rheumatoid arthritis, what clusters with that? What clusters with lupus, what clusters with Crohn's disease. So that if you have symptoms that are different that are sudden, you can start to make a connection and make a note of it and tell your doctor about it. If patients make the connection, it'll help their physicians to make the connections.
Speaker 2 00:43:45 This book is very, has a lot of information in it. And who would you feel would all benefit by reading your book?
Speaker 4 00:43:53 Well, not only patients and their relatives, but a number of physicians have told me it's really helped them too, because it's given them an understanding of these clusters and connections. And that was my intent in writing. And I wanted to write a book that was understandable for patients, but that would also help educate doctors and other healthcare providers so that somebody comes in with a symptom, a light will go on. They go, my god, that sounds like Sjogren's syndrome. That sounds like early lupus. Mm-hmm. <affirmative>, if you, you can educate people to be aware of the connections. They make them earlier and you can intervene to head off to
Speaker 2 00:44:40 What makes the body go awry like this.
Speaker 4 00:44:44 Well, there are, there are T-cells and B-cells mm-hmm. <affirmative>, and they get, quote, educated in different places. The T-cells get educated in the thymus and the B cells get educated and each one has a, a function. B cells produce antibodies. In other words, if, if you get a cold mm-hmm. <affirmative>, those B cells are going to produce antibodies to that invader, which is called an antigen. It's a, it's a technical term, but that's how what it does, it produces antibodies. And those antibodies signal T-cells and other cells to go wipe out the enemy. But if the enemy isn't an enemy, it's your body, then you've got damage to healthy tissue.
Speaker 2 00:45:38 Okay. Can you talk
Speaker 4 00:45:40 A, that's a very simple explanation for a very complex process.
Speaker 2 00:45:44 Yeah. <laugh>, it really is. Can you talk a little bit about, um, the American Autoimmune Related Diseases, um, association of what they all do?
Speaker 4 00:45:56 Oh my goodness. They are probably your best source for information. Their website has information on just about every autoimmune disease. Um, they pull together a coalition of autoimmune patient groups. Mm-hmm. <affirmative>. So not only can you access information on individual diseases and syndromes, you can connect with these groups that will help you find help. Um, arta, if you call them, they will try to refer you to center that specialize in autoimmune disease. There are no auto immunologists, but there are a number of centers that, that mostly rheumatological, that specialize in these diseases. And auto will refer you to that. They have been lobbying congress for more money for the National Institutes of Health to research these diseases. Um, they're in the process of creating a research consortium and they're, oh my goodness. They're medical advisors are kind of the superstars of autoimmunity. Mm-hmm. <affirmative>. So it's a great research. It's a A R D a.org
Speaker 2 00:47:14 <laugh>.
Speaker 4 00:47:14 Okay. And if you go there, Uhhuh <affirmative>, you can get information on just about anything and resources on just about anything to do with autoimmune disease plus the latest research.
Speaker 2 00:47:27 Why do you feel that there has yet, I mean, autoimmune diseases have been for a long time. Why is there, as of yet, no real autoimmune disease specialist?
Speaker 4 00:47:38 Well, let's put it this way. In writing this book, I had to learn about rheumatology, gastroenterology, dermatology, neurology, and a number of other specialties. Usually physicians are board certified in one or two specialties. Hmm. A rheumatologist usually is not board certified also in gastro neurology or neurology. To be an auto immunologist, you have to bridge all of these specialties. So barring having such a specialist centers need to have a compliment of specialists on board in these distinct specialties. So if somebody's having, let's say joint pain mm-hmm. <affirmative> and tingling in their foot, or they have another suspicious symptom, the rheumatologist who sees them, or the specialist who sees them can say, you know, you really should see a neurologist that sounds like a neurological symptom. Mm-hmm. <affirmative>, or if you're also having GI symptoms, they can say, well, I, I know you're having joint pain, but there are some, you know, gi autoimmune diseases that produce that. Let's send you over there and get some tests done. Because the, the more, the wider net you cast, the more connections you make with these diseases,
Speaker 2 00:49:09 How do you get your doctor to take you more seriously?
Speaker 4 00:49:15 Um, well, you know, as women we're, we're so used to chatting with our friends and telling a story. Well, it all started when I was visiting so and so, and usually you tell a story, best ways to get taken seriously is to say, for six weeks now, I have been having joint pain. I wake up in the morning and my joints look swollen and red, and I also have X, Y, Z. I'm, I, I'm fatigued. I cannot function. Um, I have fevers, I have, uh, stomach pains. The more specific you make your symptoms, the the more seriously they'll be taken. If you tell a story about Yeah, how you happen to have some aches and pains on a trip, basically the, the doctor's going to tune out. Hmm. And I think that, I mean, it's not the fault of women or their doctors, but I think it's the way we tell the story. We have to be very specific. And if you've had symptoms that bother you, and if you, if you have an autoimmune disease, you really have to keep track. You have to make your own medical file, you have to keep the blood tests together. And if something sudden comes up, something unusual, you make a note of it.
Speaker 2 00:50:42 You
Speaker 4 00:50:42 Know, because medicine is, yeah.
Speaker 2 00:50:44 I, I think this is, I mean, fascinating. I think you're right there. A lot of you, you really do have to be accurate and get all your quote ducks in a row. And I think that it's, it's interesting that this is 75% of the autoimmune disease. You know, reports are women, well, I can't imagine what the other side, where the males are go through because they're taught, don't complain. Don't go to your doctor. <laugh>
Speaker 4 00:51:14 <laugh>. Yes. So they have another problem. They're, they're silent and suffering.
Speaker 2 00:51:19 Mm-hmm. <affirmative>.
Speaker 4 00:51:21 Um, but this kind of dismissal of women is, is, has occurred in cardiovascular disease.
Speaker 2 00:51:27 Oh yes.
Speaker 4 00:51:28 Woman goes in with a chest pain and she's told it's stress guy. A guy goes in with a chest, chest pain right away. The assumption is a heart attack. So the yes, there is a gender bias. It's, I think it's largely unintentional, but women have to be aware of it. And you have to be Virginia Lad, who's the head of <inaudible>, is very fond of saying, you've got to be your own best advocate. Mm-hmm. <affirmative>, don't let anyone say no. It's all in your head. That doesn't sound like anything. Insist.
Speaker 2 00:52:03 And
Speaker 4 00:52:04 It's, there's something going on here, I'm hurting. Please pay attention.
Speaker 2 00:52:08 And it is very important that you do that. Advocating for yourself is hugely important, especially nowadays, I think, because a lot of people are going to the doctor by themselves. Um, what has it writing this book, uh, done for you personally? What has it given to you? Um,
Speaker 4 00:52:27 It gave me a real appreciation of the human body. Mm-hmm. <affirmative> and the immune system. Um, I also teach this at St. Francis College, and I had to teach a biology course and teaching the students basic biology gave me a refresher, you know, I you explaining it to them. I'd say, well, what's the best way to tell people about this? So this book has really given me that. Um, and listening to women's stories and hearing the common threads and hoping that more efforts will be made to, you know, and you go into an emergency room, you're, you're triaged. Mm-hmm. <affirmative>, people with most severe symptoms get seen first. Yes. So with autoimmune disease, you really, you need a triage specialist. What symptoms are most alarming?
Speaker 2 00:53:26 Ah, that's a good point.
Speaker 4 00:53:29 What, what's most telling? If there are autoimmune diseases that aren't that well known, like psoriatic arthritis,
Speaker 2 00:53:38 I didn't know about it. Iliac.
Speaker 4 00:53:40 Well, psoriatic or you have, uh, psoriasis, ah, you may be susceptible, you may develop a form of arthritis years later mm-hmm. <affirmative>. So if you're seeing a dermatologist for psoriasis and they don't know about it, and you start having joint pain,
Speaker 2 00:54:00 Ah, yes, the alarms go on. Now
Speaker 4 00:54:03 The alarms go off. So unfortunately, it's up to us to sound those alarm bells. But there are a lot of really, really knowledgeable people out there. And the knowledge is increasing, which gives me a lot of hope. But, you know, they, they do need a lot of research and we do need, uh, research consortiums, um, where institutions pool their information. And Arta has been advocating for that for years. Um, there are more autoimmune diseases, more people suffer from that than from cancer and heart disease. And the funding lacks greatly behind
Speaker 5 00:54:44 Api.
