Introductions

[00:00:00] Tiffany: Welcome to AI Arthritis Voices 360, the podcast solving today's most pressing issues in the AI arthritis community. We invite you all to the table where together we face the daily challenges of autoimmune and autoinflammatory arthritis. Join our fellow patient co-hosts as daily lead discussions in the patient community, as well as consult with stakeholders worldwide to solve the problems that matter most. Whether you are a loved one, a professional working in the field, or a person diagnosed with an AI arthritis disease, this podcast is for you. So pull up a chair and take a seat at the table. Well, hello and welcome to AI Arthritis Voices 360. This is the official talk show for the International Foundation for Autoimmune and Autoinflammatory Arthritis, or AI Arthritis for short. My name is, Tiffany Westridge Robertson, and I am the CEO of the organization and also a person living with an AiArthritis disease. My primary diagnosis is non-radiographic axial spondyloarthritis . So long. Every time I say it, my name that it's like, wow. And that little giggle you hear in the back is my brand new co-host to the scene in 2022. We are excited to welcome Leila. Hey, Leila.

[00:01:30] Leila: Hey, Tiffany! Thank you so much for having me here today. I'm so excited. It's my first recording of the talk show, so I'm super excited to get into this. For those of you who don't know me, I am the new Health Education and Engagement Manager here at AiArthritis, and so I take care of the "E" part of our "E.A.R" that we talk about. That's our mission, that we always go over Education, Advocacy, and Research. And I am also a person living with AiArthritis diseases. I have SLE or lupus, and also the manifestation of lupus nephritis. And I am newly diagnosed with Sjögren's syndrome.

[00:02:05] Tiffany: Alright, and that is just a really good thing to have. A side note here. You'll see that many of our leaders at a arthritis. Are living with the diseases as well. So it's not a requirement to be employed with us . It just kinda happens, and even one of our, one of the people that we're working with, shout out. Phedre is convinced she actually has one of our diseases. So she just told me today she's got her rheumatology appointment here in a few days, so. Oh, that's so awesome. Yeah. on the roll, she already does have psoriasis, which is an autoimmune disease, and she had low back pain for a very, very long time and she was told years like, I think it was like 15 years ago or something like that when she was much younger, that it was something with just like a low back syndrome. And I said to her, wait, psoriasis plus arthritis plus your back. You probably either have psoriatic arthritis or you have non-radiographic like I do. So I'm telling that also as a segue into what we're talking about today. See how smooth, smooth Leila, so smooth segues. So Leila is going to tell you exactly what it is that we're putting on the table today.

Putting the Topic on the Table: The Challenge of Getting Diagnosed

[00:03:23] Leila: Yes. So for Phedre and many other of different patients that may come, we may come across in our different stories that we get from social media, from just talking to people. One of the toughest parts of having an AR arthritis disease is getting a diagnosis, and patients can be waiting anywhere from one to 10 years to get a proper diagnosis. When first hearing about our symptoms, a Dr. may think that, oh, you may just injured yourself and maybe you need physical therapy. Some are saying, oh, it's probably caused by your depression. Maybe that's why you're in so much pain all the time or they may not even believe that you have these symptoms because you may be young, you're an athlete, you're a dancer. You do all these different active things, and they may say, oh yeah, you just injured yourself and you didn't know it, and things like that. So, When those symptoms are dismissed, we end up prolonging the diagnosis for long periods of time. And so we want to be able to hear different patient stories and really innovate resources and tools directly, um, from the needs of our community. And one of those topics is this is early detection, early diagnosis, and with early diagnosis, therefore early treatment and prevention of progression of the disease.

[00:04:41] Tiffany: So what a great introduction, Leila. She is a natural, isn't she? So we thought, we've talked about the Auto + arthritis in past episodes before. We also host World Autoimmune Autoinflammatory Arthritis Day every May 20th, which we focus a lot on this as well. But the reason we're bringing it back on the table is because we are talking about a very specific situation here, and it's really about how we think at our organization. If we could create materials, if we could tell the stories, if we could get the public, the primary doctors, and you know, the, the first liners if you will, to be able to recognize our diseases earlier then we could have better options for increased quality of life and for remission and because we'll could get access to treatments earlier. So we are going to be creating some resources that are auto plus arthritis that we wanna get out and we're circle back a little bit later and ask you for your input, but it's one of the first projects that Leila's taking on and working on as our education manager. So it's kind of exciting for show one of the first projects, see how that works. So we're gonna start off by Leila. Why don't you tell a little bit about your diagnosis story, because really the diagnosis story is the heart and soul of the auto plus the arthritis, and how we could use these stories in order to expedite that referral and diagnosis.

Leila's Diagnosis Journey - Addressing Challenges from Childhood into Adulthood

[00:06:18] Leila: Absolutely. So I think I have a pretty unique diagnosis journey. It started when I was eight years old. I was actually diagnosed with immune thrombocytopenia or ITP for short, and that basically means that I had extremely low platelet counts. So you're supposed to have anywhere from 150,000 to 250,000 platelets at any given time. And at that time I was at about 12 to 16,000. And so I was getting giant bruises on my legs and arms because I was playing volleyball and basketball and my mom was really concerned about it, so she brought me to the doctor and was concerned because my grandma actually passed away from leukemia, so we thought that maybe it could be leukemia. And so when we got the blood work back, my mom was like, I'm at work right now, but Auntie has to take you to the emergency room now, and I was in the hospital and I had to try a bunch of different treatments. Over a year or so, I finally fell into rituximab, which is actually one of the, one of the treatments that's used for ai arthritis diseases, also, including lupus. And recently found out that ITP is actually now considered a precursor to Lupus. Therefore, when I was doing all of my blood work for the hematology in I T P, they saw some markers of inflammation in my blood work and sent me up to rheumatology after I was done with all of that. It took about two or three years for all of the criteria to manifest in order to be properly diagnosed with lupus. At that time, there were 12 criteria and you had to hit eight in order to be considered diagnosed with lupus. And that's, you know, your C3 and C4 compliments your double stranded DNA, all of those different things. And then, Photosensitivity to light, so I ended up getting a formal diagnosis when I was 12 and since then, I've been on Plaquenil, but nothing really manifested except for maybe some little joint pain here and there when I was stressed out during finals and middle school and high school and nothing really came about it, and I was very, very mild symptoms until I turned 18. And that summer I was probably stressed because I was also moving out to college. But at the same time, I got a viral infection and that triggered my lupus to go completely haywire. And that was my first big flare that I've ever had was from the manifestation of the viral infection. And so from then on, I was fully in being a Lupus patient from 12 to 18. It was kind of something that I was like hiding from people. I then no one really knew because it didn't matter. It didn't really show much in my life. And when I was 18, that's when I was really hit with oh, okay. This is something you have to be serious about and you have to really learn how to take care of yourself, or it can really take you downhill. So I had a really big wake up call when that happened, when I was 18, and also with the fact that I had to do it all by myself because I moved away for college. So my lupus diagnosis really was the Expeditor to me growing up and really being an adult too, so that's a little bit of my story and it's, it's different than a lot of people would get because I kind of fell into my diagnosis rather than fighting for a diagnosis, you know?

[00:09:41] Tiffany: Yeah. Well that's good. That's a good thing. Yeah, . But I think that it's really important to share too, especially as we're wanting to create this auto + arthritis, because one of the things about our diseases is they vary per individual. So your lupus in your experience. Some others may go, oh my gosh, that sounds just like me, where others will have a somewhat different journey. And just as a side note, I guess it was, I don't know what year, maybe 2017, 2018, the Food and Drug Administration (FDA) had they do, it's called PFDD, which is the patient focused drug development and lupus had a meeting and I was there for the meeting. And in the meeting they talked a lot to patients and tried to find out their top symptoms. And so they were talking about the fatigue, the brain fog, those are what we would call auto. And then the third ranked was joint pain. But something you did mention a lot of was the joint pain, because it sounds that you were overcome with the auto, right? 

[00:10:45] Leila: Mm-hmm. . Yes, definitely.

[00:10:46] Tiffany: And that is important to note because there's a lot of autoimmune diseases and autoinflammatory both sides of the immune system. We lump them into one umbrella, but there's over a hundred and so in the absence of arthritis, we still want to focus on our materials. Okay? What in that auto could be one of our diseases? And even if it's not the arthritic component, so I wanted to mention that. Cause I think it's important as we start to think about how to create these materials. And then there's gonna be some that have more of an arthritic and less of the organ or the systemic or the auto, right? So we really wanna create something where it can be a group but it also can be individualized. 

[00:11:35] Leila: Definitely. And you know, I, now that I'm thinking back, I didn't associate my joint pain that I was having with my lupus at that time because I had dislocated one of my hips when I was, when I was 12. So I've had bad hips when I was, since I was very young. And so I never attributed the pain that I was going through. To my lupus. I always thought, I never knew that lupus could, you could, could cause you joint pain. I was always like, I don't even know what lupus is, because I was so young when I got it. Like I, I was like, I have lupus, but I don't know what it is.

Recognizing the Early Symptoms & Understanding Flares

[00:12:04] Tiffany: Exactly and I'm just kinda thinking outside of the box here too. Even when we're developing these materials and they live on our website here in the future, developing the search engine and, you know, the, the words to type in, what would a person type in looking for their symptoms so they land on our page, right? So, mm-hmm. . But anyway, my diagnosis journey, little bit different. I was older, I was in my mid thirties and. Very active an athlete. I kick boxed. I played sports. I was going to the gym all the time. So it started with just feeling overwhelmingly fatigued. Overwhelmed. Like I Energizer Bunny kind of person. Like I would go to work. I'd go to happy hour, then I'd come home and I'd pull all the cabinets off my kitchen and stain 'em on the porch. And then I'd go to bed. Like I was always doing something. And when I couldn't even stay awake past 6:30 at night, I knew something was wrong. , like it was a big, big red flag. So that was the beginning. And I also started with chest pain, which I thought was a heart attack and so those are also some examples of, you don't think AiArthritis disease, like I'm having chest pain and I can't stay awake. That's not, you know, that that's not what you, what your brain thinks, but the chest pain was actually enthesitis, which is the costochondritis. It's where your cartilage and your ribs, where they connect with your tendons and it causes pain. And so, even though that's not joint, enthesitis is also hand in hand with joints. It is more common in the spondyloarthritis actually. So the psoriatic arthritis, the axial spondyloarthritis, Crohn's disease, anyone who's it calls in that spondy family and that would've been a great first indicator, but nobody connected those two. Nobody. And then it went to my left side of the body. I woke up and I couldn't put my shoe on and it traveled up and I joke about it that it was my middle finger. I'm like, that's appropriate because I didn't know what the heck was going on. But it was all the left side of my body. And that is another symptom to help you differentiate once you get from auto and you have now, it wasn't necessarily arthritis, it was enthesitis. So we've got kind of a breakout there, but it was on one side of my body in some of our diseases when you go to differentiate those diagnoses, while RA could mirror eventually, if it doesn't and it stays on one side, that is also an indicator that it is, like it rules it out, okay, this probably isn't rheumatoid arthritis. So those are the kind of things we're looking for. Your stories matter. Just us two.

[00:14:55] Leila: I was actually, when I was doing the disease pages that we were gonna talk about in this, in this talk show too. The disease pages that we are going to premiere very, very soon that we've been working on since I also, since also since I started. Mm-hmm. . I was very interested to hear that about the difference between RA and the spondy ones where it's, it can mirror more likely for rheumatoid arthritis. But then for spondy, it starts on one side. And I, I was like, that is very specific and something that people really need to know because it it, it really will say more of like, that it's not an injury and, and things like that, like we are saying.

[00:15:35] Tiffany: Yeah, because that's also because I was an athlete. It was, well, you must have injured yourself. Clearly. You injured yourself, you just don't remember. And I bought it, like I kind of went into it a little, little bit the first time, but after like the 18th time, it was, it was kinda like this. Hmm. And that's another thing, the flare. I didn't know in the beginning why it was coming and going. And I also thought it was real strange, it would be like so much pain and then all of a sudden, like it could be two hours later, nothing was just gone and it could last weeks or it could last a day, but when it was gone it was just like, shoot, vanished and that's something, a flare and figuring that out. The other thing about the RA is now, this was, you know, more than a decade ago, but they did not know what I had because I didn't have positive blood work. I didn't have any x-rays or anything like that that showed, I just didn't have the tests. And it was really hard to believe me because I looked like an athlete. I was, you know, very fit and trim and everything, and young, and you get all of that, well, you're too young to have arthritis, which is an issue in itself. And so they kept saying well, it's undifferentiated disease. We know it's something in this family, but it hasn't progressed enough for us to identify it. But they kept saying RA, and she kept saying that it couldn't be RA because the rheumatology being she, because it was in the left side of my body. So she knew that, and I wondered to this day why she didn't start to mention anything about a spondyloarthritis. She just kept saying, it can't be RA because it's not mirrored. And I went a year and a half and one day it mirrored. And I remember calling the office going, it mirrored. It mirrored and not little did I know, I mean only mirrored in like my ankles or my foot, but it was one spot and it was just that it had been progressing and getting bad because I did have a diagnosis. It wasn't because everything that hurting the side was now hurting the other side. So another thing, but then eventually I did get rediagnosed. I was diagnosed with RA only because I couldn't be diagnosed with my diagnosis in 2009 because it didn't exist. There was no such thing as radiographic. It was only ankylosing spondylitis. And I didn't meet the criteria. So I and and myself had that journey. And you do kind of wonder when will there be other diagnoses out there? Like who is, you know, walking around with something that might not even be their correct diagnosis. So we kind of blend. So when we do the show, we, we start with this outline and we got these nice little bullet points and we say we're gonna talk about A, B, C, but conversation flow.

Mm-hmm. . So we've actually wrapped a little bit into the next point. So Layla, you, as we're talking about stories, and these are just the greatest ways for us to understand what we need to create in these detection models because everybody's story is different. Mm-hmm. , so you were telling me about, you had a story about a friend who was seeking diagnosis and I thought, well, that's exactly what these materials are supposed to do. So why don't you share a little bit about that. 

The Challenges of Getting a Diagnosis 

[00:18:57] Leila: Yeah, so one of my friends, she, a few years ago went vegan and then she had to get all these, you know, different shots for the minerals that you might be missing when you become vegan at first. When that happened, she also started to develop alopecia, and so it was very, she, she believed that it was stress-based, that, you know, with alopecia everybody says, you know, it's stress-based and then, then you have to try to realize like, Is causing stress in your life and what's not. And she's been battling with this alopecia on and off ever since then. And recently she's been telling me that she's been so tired. She's been having a lot of manifestations of anxiety and depression that she didn't have before. And a lot of joint pain additionally, and she's always written it off as she was an athlete. She played club volleyball since she was nine years old until she was 18 years old. She played basketball and club basketball all throughout those times too. And so she's kind of just been, you know, dealing with the pain. She's telling me that it's manifesting in her shoulders and her back now, and I really was trying to encourage her like you know, she's trying to get a hormone panel test done to see if maybe that's what's called causing her fatigue and, and things like that. And so she had to go off her birth control just to get that hormone panel done and doing all these different things. And I'm like, you know, maybe you should also at the same time, explore another route and just see if it can get ruled out of maybe having some type of autoimmune disease because you know, a lot of different diseases can overlap. You know, maybe it is something like PCOS or, or something like that that could be causing the fatigue and the alopecia and things like that. But we also wanted, I wanted to encourage her to, okay, maybe you should just talk to your primary care doctor to see what you can do about maybe getting a diagnosis. And she's like, well, first I don't have a primary care doctor yet. I just had to get a new insurance. So she has to work on doing that. And you know how that goes. It just prolongs it even more You, we don't have an appointment for three months and it's like for a primary care doctor, are you serious? It's so difficult sometimes. And so she just kept asking me, okay, maybe it is something with autoimmune after I was sending her a few resources, but she's like, but what do I say? What do I say to him? Like, is there a test that I can ask for? Is there this? And I'm like, oh, I don't wanna tell her like unfortunately, no, there is no. That can just tell you, yes, you have autoimmune, or no you don't. They can test your blood to see if you have any inflammation markers, and maybe they can see if there's some, you know, manifestation of inflammation there. But unfortunately, majority of our diseases don't have a blood marker that will just give you a automatic diagnosis. I think Lupus is one of the only ones that do have blood markers that can give you an idea that, okay, this, this is lupus, but you need a few more criteria to really get the diagnosis. But yeah I sometimes I'm like, I feel so bad because it's like we want to encourage them to get help to see what their diagnosis could be. But you know in your heart too, that you're sending them on a journey and you have to be there with some support or some tools for them to support them on that journey or else it's gonna be extremely frustrating.

[00:22:20] Tiffany: 100%. I get that all the time. I mean, ever since I'm, what an original founder and now co-founder of this organization, and I would have to say that's one of the things that we've been asked the most. So that's why I am personally very excited about getting this project underway. I feel like we've collected a lot of information, a lot of data over the years to create these and help people with that exact tool. Phedre, I'm gonna bring it right back. She is going to this rheumatologist and she's scared because she has heard stories too. Just a little time that she's been working with us and was, what if I'm not believed? What if they can't find anything? What if my blood work is negative and. It is a reality when you can't, especially if you don't have certain biomarkers, measurements in your blood.

Things that are sometimes correlating with one of our diseases. And you said lupus is one where you have to have a certain level of your ANA, which is a blood, there really aren't many of our other diseases. Still's disease the ferritin levels will often be high. For most of them, you can have RA, for example, without being rheumatoid factor positive or it, if you are and you have certain elevated blood levels, it typically will indicate that you have more aggressive disease, but it doesn't mean your blood work is negative that you don't have it. And that's probably for me, the most frustrating thing because people don't know what to say when they go in, they're not equipped. They just wanna list, the doctor is the expert, right? And so they're just listening to it. I can't tell you how many people close to me, my mom, one of my best friends in the last couple of years have come to me and said, guess what? I don't have one of your diseases. Because the, my blood work came back normal and I just can't like, seriously. It's unbelievable if it's happening to everyone I know who's going to a rheumatologist in my family, and most people in their family also don't have an educated person to say, that's not an answer, that's not good enough. So I just personally feel like we don't, we don't have it written down yet, but I think we're ready. I think we're ready to create at least some kind of patient led guidance to create this patient infused solution, which is part of our mission, right? We we're the right people to do this. And as we start to wrap up this episode here in a bit, we are going to give you some information on how you can help us to get the information.

What would you recommend that people say? What should the symptoms be? You share your stories and that will help us be able to create these grids and these graphs to, okay, it could be Sjogren's. Ooh, it could be sarcoidosis, it could be lupus. It could, that's our goal here. So, moving forward, we wanted to talk about the symptoms. So as we're creating these, I'm gonna let you take the lead on this Leila, you've done such a good job. We keep talking about these disease pages and the, by the time this airs, I think they're gonna be up. But if so we're, we're, we're talking in the future here. We're recording this ahead of time, but these have been underway and I'm real excited. So why don't you go ahead and take it.

Future AiArthritis Educational Content on AiArthritis Diseases & Tips for Symptom Tracking

[00:25:52] Leila:  Yes, so we are gonna be premiering, our first set of disease pages is gonna be the first five diseases out of our 22 that we have. So we're gonna have that premiere talking about the different auto plus inflammatory arthritis symptoms. For auto, what we have as the generalized symptoms would be severe fatigue or exhaustion, and that may not be helped by caffeine and stimulants and can happen even after a long period of rest. So that's something that has to be really observed like people have to be very mindful when they're trying to take track of their, of their symptoms. Like symptom tracking is super important when you're trying to get a diagnosis. I can't, I I would like to emphasize it as much as I can because having the exact times of how long your pain or, or fatigue has lasted is super important.

So severe fatigue and exhaustion. The next auto symptom would be brain fog, which we hear at our organization talk about a lot. Since, because we do all have, most of us do have the diseases. Yes. A lot of our brains may not be working at the same time. So we do have to kind of work with that and, and make sure that we're super understanding when someone just like I'm having a bit of a brain fog day, I'm gonna take it light. So that's one of the biggest things. Another is flu, flu-like symptoms, so having nausea, muscle weakness, and, I think that that one's really big is the muscle weakness. I get really weak muscles in my shoulders and my quads, and I don't think it's like.

[00:27:30] Tiffany: Yes. Me too. My quads. I'll be walking up the stairs like, oh wow. I just feel like I'm out of, it's, it's not, it's out of energy in my muscles is what it feels like. No, exactly. And you're not tired necessarily, but my, my muscles are tired, so it's, yeah.

[00:27:40] Leila:  Yeah, that's, well, one's really big for me. Another one is fever, and the funniest thing is that I've never experienced fevers with my lupus, and that's one of the biggest symptoms that they ask you for. So everybody's symptoms are gonna be extremely unique. 

[00:28:00] Tiffany: Yes and that's a disclaimer that we're definitely gonna put as we pull this data and pull these resources together for you, is that kind of asterisk. Not everybody is the same and there could be a variation and just for the fevers in itself for me, I kept saying I have a low grade fever every time that happened. And they, but my regular temperature in Fahrenheit is 97.4. So sometimes even 97.1. So I've got a low, because 98.6 is considered normal, but if I'm like 98.8 or 98.9, that is a fever for me. A fever for you? Yeah, for me. And no matter how many times I say that to medical professionals, they just, they scoff at me and I just think that's so ridiculous. If my regular is always, when I take it and it's normal, it's 97.4. Why is that unheard of that, that is a low grade fever. But anyway, especially when it is a low grade fever.

[00:29:05] Leila:  And again, symptom track tracking would therefore give you the data yes, to present to you, to the doctor. If you literally take your temperature every single morning and it says, that number then, you know, that would be very good to give that.

[00:29:19] Tiffany: That's a good indicator and that's what most medical people need. They need data, they need proof. Especially if your blood work is showing up negative, you don't have imaging and you don't have anything else. You can have your symptoms tracked, right? You can have your own map of what you're experiencing.

And then there's another leg of this that we're call the inflammatory arthritis symptoms, and they are, when we're talking, we, we also. , thank you for saying the inflammatory arthritis, cuz I kept saying auto plus arthritis and I gotta get that out of my head because arthritis is an umbrella word though. Singular is always referred to as osteo osteo and we really need to make it very clear that it's inflammatory type of arthritis associated with having an autoimmune or autoinflammatory disease. So that is a big one cuz if we just said autoimmune plus arthritis, that could be, any autoimmune disease plus degenerative osteoarthritis, so we've gotta get the language clear. So thanks for keeping me online, Leila. So that's what I'm here for too. That is, that is, so one of the things that we have on here is that severe stiffness, and one of the things that we've talked about is it's all, it's, it's different than the other type of arthritis.

Cause it is typically when you're at rest. So when you wake up first thing in the morning or you've been sitting for a long period of time, it is this unbelievable feeling of stiffness. And it's not just in a, in an ankle. It's not just in one knee, right? It's your whole body. Yes. And that's an important one, because osteoarthritis, while you can have it in many locations, it's localized to the area of damage. So this is going to feel like, oh, my body just, I feel like I'm, you know, people like, I'll say, I feel like I'm getting old, like, you know, and it's just, you don't realize that something else is going on, and we've also made the comment that it can feel like all of a sudden your mattress is not comfortable anymore and you're, you're trying to justify it in your brain. What's been going on? What are the other ones here that we have Leila?

[00:31:39] Leila:  Another one would be the episodes of joint pain.So that's a, again, a flare, or it also can be called jumping pain because it can jump into different locations and these, you know, we say that it's an episode of time, but that can really last for hours, for days or for weeks. And that's also, again, gonna be different for everybody. Absolutely. And it says here also that we wanted to emphasize that typically joint pain will coincide with one or more auto symptoms. And when we're naming these symptoms down, like we said, you don't have to have every single one. It's more of like a pick list of like, okay, I have this one, I have that one and okay, let me observe if I might have this one. Write it down, take down the notes, and then bring all of those things together to therefore present as maybe I could have this diagnosis..

[00:32:31] Tiffany:  And to not fall into the mental trap of maybe I did injure myself, or maybe that joint pain or that enthesitis, that tendon pain is because I went to the gym and I worked out for too long. If it's repeating itself and it's lasting, you've noticed it for longer than six weeks. That's considered chronic, so that often gets dismissed, especially two ways. You're young, you injured yourself, you're old, I'm just getting. , and we call  that medical self gaslighting.

[00:33:02] Leila: That's one of the things that we do is, you know, we try to talk ourselves into, oh, you're just thinking that you're in pain. Like you're not really in pain. Like a lot of us go through that. Even with me having my diagnosis for so long, sometimes I'm like, am I really in pain or am I just making an excuse for myself to not go out today? And it's like, you know, Even if you are, it's okay. You have to be okay with that, you know.

Final Thoughts, Contact Information, & Resources

[00:33:29] Tiffany: Absolutely. Well, I think we covered all of our points. Correct me if I'm wrong. I think so too. All right. Uh, so essentially, hey Leila, you also have yourself a social media presence that we didn't mention in the beginning. Yes. Let's have people find you there as well. Tell people where they can find you outside of Aiarthritis.

[00:33:54] Leila: Yes. So if you wanna know a little bit more about my story, see about more of my disease on a day-to-day basis, I am at LupusLifestyle.Lei. That's LupusLifestyle.Lei. And you can find me on TikTok and on Instagram are my two main platforms that I'm on. And there I talk like to talk a lot about health education and talk about more of my disease journey with no filter.

So that's my disclaimer is that I talk about the raw, the real all that's going on while also trying to put a little educational spin to it sometimes. And yeah, at Lupus Lifestyle.Lei.

[00:34:31] Tiffany:  Awesome. And you can find us at the organization on all our social media platforms. At IF which stands for the International Foundation, AiArthritis, all one word. Twitter, LinkedIn, TikTok. We're on everything , but now we're starting Reddit too. I understand.

[00:34:53] Leila: Yeah. We wanna get into Reddit so that we can talk to these mystery patients that we're talking about who are looking for diagnoses, and so that's one of the big projects that I wanna take on with, hopefully with Phedre also, she wants to be a part of that too, and I think that'll be a good place for us to reach out to people who are really struggling with finding a diagnosis and finding a community to help them along that diagnosis journey.

[00:35:15] Tiffany: Absolutely. So if you want to get involved in this project, where are we going to send them?

[00:35:24] Leila: So the way that you can let us know if you have any other advice for patients that are seeking an arthritis diagnosis, specifically with our Auto Plus arthritis breakdown of those symptoms, you can let us know. It's gonna be aiarthritis.org/diseases, and on that page you'll be able to find the auto + arthritis the breakdown of the different symptoms, and there'll be a button there that'll lead you to a Google form that you can fill out what you think would be good on this tool when it comes to communication with primary care doctors and any of the first liners when someone's looking for an AiArthritis diagnosis.

[00:36:02] Tiffany: Absolutely. So check out that. Check out that form. Submit your story, submit your ideas. We are firm believers here of that all of our voices matter, and that if we just do things as simple as sharing our story or all the way up to giving us advice on what you'd like to see, there's always room at the table for you.

It's very, very important. So you'll find that on our website also, while you're there we always encourage you to hit that big red donate button because we can't do what we do without your support, and we appreciate everybody who does support us. Thank you so much, and I think that that is a wrap. I think we got it down. Yeah, we did. All right. So thanks everyone for tuning in to this episode of AI Arthritis Voices 360 and welcome again, Leila to the co-host team. Thank you, AiArthritis Voices 360 is produced by the International Found. For autoimmune and autoinflammatory arthritis, find us on the web@www.ai arthritis.org. Also, be sure to subscribe to this podcast and stay up to date on all the latest AI arthritis news and events.