In honor of Autoimmune Disease Awareness Month, Indie chats with Lilly Stairs - autoimmune advocate, Founder & Principal of Patient Authentic, & acting interim CEO of American Autoimmune Related Diseases Association (AARDA).
Lilly and Indie talk about Lilly's journey living with multiple autoimmune diseases, the importance of patient advocacy and how she found her purpose through her diagnoses.
Links:
In honor of Autoimmune Disease Awareness Month, Indie chats with Lilly Stairs - autoimmune advocate, Founder & Principal of Patient Authentic, & acting interim CEO of American Autoimmune Related Diseases Association (AARDA).
Lilly and Indie talk about Lilly's journey living with multiple autoimmune diseases, the importance of patient advocacy and how she found her purpose through her diagnoses.
Links:
Hello, everybody, and welcome back to coming clean with Indie Lee. I'm your host, Indie Lee. And today I am really blessed. I'm sitting here with Lily stares at Lily, we first met at the congressional hearing, I think it was almost two years ago for American autoimmune related disease Association. And I can, I can truly remember you talking about your story and how you got involved with the community, aka Arda, and I'll be honest, I was like, tearing up in the audience, just your passion. And so I'm so happy you're here to share with us. And by the way, Congratulations, you are now the interim CEO of art. So very excited for you. Oh, thank you so much. Indeed, thank you for inviting me to be here. I am such a fan girl of your work and all that you do. And I am so grateful that you've come on board to support the autoimmune disease community as an autoimmune disease patient yourself. I didn't realize that there were so many resources available. And that's why I'm so happy that you're here to talk and really share this information and what people are going through. Now this podcast is all about, you know, becoming present, sharing your passion and how that became your purpose. I love if you would share a little bit about your autoimmune journey and how you kind of came to be a patient advocate as well. Yeah, absolutely. So I am a three time autoimmune patient. So I'm, you know, lucky to have all three I have a I have I have a friend with a few autoimmune diseases. He says autoimmune diseases are like a chip. You can't have just one. True. It's so true. So I was diagnosed with psoriasis at the age of seven. And, you know, I went through a lot with that, in that. I was doing topical steroid treatments I had it looked almost like chicken pox over my whole body. And that was hard for me. Mentally it made me feel different. It made me feel achy, like people were looking at me. Like I looked weird. Like I had some sort of weird contagious condition, which psoriasis is not contagious. So I would actually go get up every morning before elementary school and my mom would drive me into the city to get these light treatments to treat the psoriasis So shall we that's where it all started. And what's really upsetting is that at that time, nobody referred to psoriasis as being an autoimmune disease. It was really just a skin condition a skin you know, quote unquote, skin condition and sister has it. psoriatic arthritis. And there is a systemic component to it that it is you know, and and the psoriatic arthritis piece 30% of people with psoriasis will get psoriatic arthritis. But nobody ever mentioned that either. And 30% is a significant number. That's not a small statistic. That's not rare. That's pretty, pretty large. So, you know, fast forward to me turning 19 and I had just wrapped up my freshman year of college, and loved it. I was at Northeastern University in the city in Boston, and couldn't wait to get back. I was home for the summer, and started to have this pain in my knee. I thought it was a workout injury started going to physical therapy. And then I went on vacation to me and with my family. And every morning, I started to wake up and feel achy. And I thought, maybe it's just the beds, you know, we're in a weird place, we're in a different place. And the beds aren't, you know, great, super luxurious or anything. But then I'm like, Oh, I'm in college, I could really, I could sleep on our floor somewhere and be fine. So it didn't make any sense. And then we got home. And one day, I woke up and I literally couldn't move. I was paralyzed with pain throughout my entire body. And so of course, that started a whole series of testing and going to the doctors. I remember when we were chatting, you said that you thought you had Lyme disease that was weird where my head went first or Parvo virus and so we started getting done. Exactly, yes. You know, negative, negative, negative, but I had these really high inflammatory markers, like dangerously high and did end up getting the psoriatic arthritis diagnosis. And I was just devastated. Because here I am 19, you know, seemingly very healthy and I was so sick and to have this arthritis diagnosis. I'm like, well, older people get arthritis, not somebody my age that doesn't make any sense. And come to find out. arthritis is not an old person's disease. And there are a lot of people same thing I said, same thing I said, someone said when my doctor said I think you have you would have rheumatoid arthritis. I said, I'm too young. He says it's not an old person disease. Right? What So many people don't realize that so that now I got my second diagnosis on board. And I was really going through a lot to try to get that under control, trying and different medications. And it's a lot of trial and error in autoimmune, we don't have all the answers. And so you sort of have to try different things to find the right cocktail that works for you. And it's no one size fits all approach. So six months later, after receiving this radical arthritis diagnosis, I ended up with this unbelievable stomach pain, unlike anything I'd ever felt before, it came out of nowhere. And I was in and out of the ER three times in one weekend, in and out of the ER three times in one weekend, because the nurses and physicians unfortunately, seemed to think it was all in my head. And that I was seeking narcotics, I thought that, you know, it was a mental thing, which is, I believe, very common, that common, especially when it comes to these pain, and they're unable to pinpoint it, right, and then just give you a pill, they think you're looking for a pain pill. Exactly. It's devastating I Indy I talked to so many women living with autoimmune conditions, and they all have a similar story to mine. At some point in their journey, they've experienced dismissal or disbelief by our folks in our healthcare system. And it's just it's the way that our system is designed, we're not training medical students properly and and it's also some of these inherent biases that we have with women and not believing. And so it's, it's something that needs to be addressed. And it's particularly difficult for women with autoimmune diseases, that 75% of people with autoimmune diseases are women. So it is it is really a female problem. Um, but anyways, so I could really do a whole nother podcast on just that we will. So finally, I'm admitted into the the ER, and I've there for two weeks, we went through a series of different tests. Finally, they said, we've got one more test we can do, if, if this shows nothing, we, that's it, we have nothing else to do for you. So I took this pill that had a little camera inside of it, and it took pictures as it moved through my body every three seconds. And that was when they discovered bleeding all sorts of my small intestine and diagnosed me with Crohn's disease. And so here I am, you know, three, autoimmune diseases, right? Three, at the age of 19 illnesses that I'm going to live with for the rest of my life. And I pulled up my computer, and I started Googling, I typed in all of these conditions, and what term comes up but autoimmune. And I'm so angry, because I had never heard the term autoimmune before. But come to find out there are 50 million Americans who are living with an autoimmune disease. And so I it really was from that moment in the hospital that I didn't know what patient advocacy was at the time, but I knew, I really knew it was going to be my calling to do something to change this. I have a quick question on when you got the diagnosis of Crohn's. Did you feel a sense of relief that you finally knew and that they were hearing you? Yes, I did. And I don't know if you hear my kitty. He's, he's trying to. He also wants to be a part of this. Yes, he's very, he's like, tell my story, too. So yeah, but so I guess I was very relieved, actually, in a weird way. Because, you know, I was terrified. And I didn't know like, Am I dying? Am I like, what, what's happening here? Because nobody had answers. And they would just come in and they poke in the prod, and I just felt so isolated. And, you know, really like, like, my light is flashing before my eyes. Is this. You don't know if you're dying? I don't know if you're dying. Because they know they don't have they don't have the answers. And so that was scary. And and there's always that relief that comes when you find out okay, I don't have something terminal. But it's still lifelong. And I don't feel that I really got a whole lot of clarity. I mean, my mom and I were talking about this recently, because she was there with me. She said she even tried to type in crowns to Google, and she spelled it wrong. And they're like, wasn't because they didn't give her the information. So she started Googling it. She's like, Oh, my God, like, this must be rare. doesn't exist. Like it's not even coming up on Google. I mean, there's just there. So there was a disconnect in the diagnosis and the actual diagnosis when it happened to and I think that's so still very common. Yeah, I heard you say and I know so many people who are living with autoimmune It is very isolating. Yeah, and can lead to depression. And here we are in the midst of a pandemic, with autoimmune, those with immune compromised systems being at higher risk. So further isolating socially slash physically, is just making it even harder. And that's why I think the work that you're doing is more important now than ever. Truly. Yes, they do. Indeed. Yeah, we're Thank you, thank you. Well, thank you for for championing the cause and, and calling attention to this because it is something that our community is struggling with right now. And of course, I our whole world is struggling, right. The autoimmune condition or not, it's a it has been mentally taxing on everyone. But there is this weight that autoimmune disease patients are carrying. And you know, part of that weight is the fear and the the heightened risk for somebody who has an has an immunocompromised, and the fear of getting COVID that you know, this could this could set could this trigger my autoimmune conditions? Could you send me into a flare? Could this kill me? Or this? Can my body not fight it off? Exactly. So there's that. But then there's also this feeling that society doesn't really care about us, right? Because there's this sense of, well, if you're immunocompromised, or you're high risk, why don't you just stay home? Well, so that we can reopen and so that we can do things. It's an idea that like, oh, if you have problems, just stay home, like that's on you. And it's it? Is that like, our lives mean less? Yep. Yep. And that's a week. That's, that's a heavy burden to carry. And it is it really, it truly is. And you don't know and again, exactly what you said, it is such it's so isolating, and people don't understand it. Unless you have it. You don't understand people like oh, what do you mean, you have a flare? or What do you mean, you're in some pain? Like, I know, you know, the pain is like nothing I've ever experienced when I have a flare. It's like, I sometimes you can't breathe. Oh, god, it's it's I when I was in the hospital, I honestly, it was dark. I said, if I have to live with this pain, if we can't treat it, then this is not a life worth living. Because it was just so bad. I mean, it and that's really that's the part that I hope people are hearing. And I'm hoping that other patient advocates and other people in the medical industry are are hearing that when someone comes in presenting with something that is not necessarily hitting all the markers of what they can check off. Here them the pain could be excruciating. Yes, absolutely. And I think there's this and you bring up medical professionals and disbelief and dismissal and thinking creatively, I think is important too. So understanding that auto immune can present in a lot of different ways. And when I've got my psoriatic arthritis diagnosis, nobody ever thought about crumbs, because crowns they always just think is, you know, isolated to the GI tract. But it's not we actually Fun fact, we don't know if I have psoriasis, psoriatic arthritis and Crohn's or if I just have psoriasis and chromes, because arthritis can also be a symptom of Crohn's disease. So it manifests differently. So sometimes you could have somebody who goes to a rheumatologist first with joint pain, but the rheumatologist doesn't make the connection to krones, because maybe they're not asking about the GI piece, because they're, you know, focused on on a certain part of the body. And so it is challenging specialists to really think a bit outside of their own box and body parts and look at the patient holistically, as opposed to just thinking about that, that one, you know, specialty that they that they serve. And I think that's another part of this that I'd love to discuss is, you know, you were saying most papers, I don't know the statistics, and I'm sure you do that. The people who have autoimmune typically have like multiple autoimmune, right, so there's multiple, and so how do you know the percentage? You know, there is a study on this? And I'll have to I'll have to find it so that you can link to it in the show notes. About 25% is what they estimate. I would guess it's more than that. And this is based on diagnosed Yeah, yes, undiagnosed, or, you know, symptoms are overlapping and so you don't necessarily see like, again, like the krones diet, you know, do I have Crohn's and psoriatic arthritis or do I just have Crohn's? I think there there is a level of on diagnose, yeah, not happening. Yeah. And I think that goes to the point of it's so hard to pinpoint. There is no autoimmune doctor, you have so many specific specialists that that aren't necessarily In the same practices who know each other where you're cross referencing, and as a result, every body is different, like literally every physical, his body is different. And diseases can be presented differently. And then couple that with the ability to most people have multiple ones. So they're like, I don't know what's going on. Yeah, which is, I'm sure very frustrating for those in the medical community, but certainly very frustrating and debilitating for those who are living with these multiple diseases. Absolutely. And you know, one thing I will encourage for anyone who's listening who is dealing with that struggle, there are some autoimmune Centers of Excellence across the country. One of them Arda is partnered with in particular is the auto immunity Institute at Allegheny Health Network. And they're out of Pittsburgh. They see patients from across the country, and they actually bring all of the different specialists together, and they huddle and they talk about, you know, complex autoimmune cases. So they are they that's their specialty is autoimmune, which is amazing. But what's difficult right now is that you have to go to us. There are only certain Centers of Excellence where that's happening, right? It's not happening across the board, so and not everybody not Yes, not yet. But yeah, we're fighting for it. So that brings me perfect segue that brings me into Arda. Yeah, right now, Arda, for those of you who have not heard me say, because zillion times on social media is the American autoimmune related disease Association, which is really is a board member and is now the acting interim CEO. How did you get involved with art? And can you tell people, the listeners, what art is doing? And the importance of it? Yeah, absolutely. So my journey with artists started again, when I was in college, I actually, after I had, after I got my diagnosis, I had a couple of years of trying to get my conditions under control, one on a series of different what we call biologics, and was lucky to find one that has actually kept me in a medically controlled remission for seven years now, which is amazing. And so my senior year, I decided I want to give back, I want to do something to make a difference. And I had come across ARRA and was so excited because I was like, Oh, it's it's an organization that finally, is acknowledging all of these different conditions that I have, instead of just piecemeal, each one and you know, being in individual silos. And so I was like, I want to raise money for this organization, I want to raise awareness. And so I I'm a builder of campaigns. That's really my background is in marketing and communications. And so I said, I want to run an awareness campaign and recruited a bunch of friends blast them, I I like, meet them all my little. My team makes them all assignments. You know, I had one who was running PR one that was running, you know, admin, somebody doing events. And like, there's such good friends because they were such good sports and did a lot of work for it. But week so came up with the 50 cents for 50 million campaign, it was this idea that, you know, if we could just get everybody to donate 50 cents towards raising awareness, and funds for the 50 million Americans living with an autoimmune condition, we could really make an impact. And so that was one piece of it. That was the base of the campaign. And then, you know, we we ended up getting psi on, the car company gave us a car to travel around to New England and bring gift baskets to kids and teens living with autoimmune conditions. We dropped off strength bunnies at stuffed animals at Boston Children's Hospital for autoimmune disease, kids living with autoimmune disease. We also did a comedy show to raise funds. And we ended up raising like, over the course of two years, and I had somebody else take over the campaign after me. We raised about $25,000 for Arda is like a grassroots initiative. And so Virginia lad who was the founder of Arda, and she reached out to me and said, You know, we're looking to expand our board, we'd love for you to to apply. And so I ended up being on the otter Arda board. And I've been on the board for about four and a half years, and now have just stepped into the role as interim CEO. And I'm so grateful for it because it's just I'm so passionate about the work that we do like you are indie, and what we are doing at artists. I believe that was the second part of your question. We cover a lot of different areas. We're definitely keep busy. So you know, at our core, we do work to provide education to patients and caregivers. And we have a help. We have a call line and we also have an email, you know that you can get in touch with us in addition to our website, to help answer any questions to help support you if you're undiagnosed to help point you in the right direction. Have these resources will also if we if we have folks who come in, you know, with a specific diagnosis, we will also help direct them to our coalition partners. So with over 40 organizations like the Lupus Foundation, the Arthritis Foundation and psoriasis. And so we'll help get them connected into their their organized respective organizations as well. So that's one piece, the education and awareness, we also are in the policy space. And that's where we're you and I met on the hill in Capitol Hill and really are fighting against policies that are harming patients things like step therapy, which is one of the issues that we were talking about, indeed, yet. And this idea that patients are being forced to fail first on therapies, that that instead of going directly to the one that their doctor wants them on, because their insurance is making them try cheaper medications first, and the problem is their diseases are progressing during this time. Sometimes the point that they end up needing a surgery, or they have permanent damage. And so, I mean, they're degenerative, many of them are degenerative disease. And so once you start having that degradation, there's no going back, no going back. And so we're we are fighting, we are actively fighting those policies we've actually had recently and in December, we in Massachusetts, were able to pass reform around that, which is very exciting. And so we continue to go state by state and also working at the federal level. So that's another arm of the organization. And then we are also involved in general fundraising to we want to fund research, right? Some of this basic auto immune research is critical to us really being able to move the needle for treatments and cures down the line. Because if we unlock what's happening, at the basic level, for autoimmune conditions, it's going to make an impact for for all of the over globally, conditions that exist. So we do a lot of work funding some of that basic research. I love that. And I think that's an important part for people who are listening that there are over 100 diseases that we know that we know Oh, no, yes, yes. And I mean, even the 50 million, I truly believe is understated because of the lack of diagnosis that goes on, or for people not believing because somebody didn't listen to them that there actually is an underlying disease. Absolutely. Because they run the spectrum it true. I mean, some of them are easy, easier to test for others of them not so much. I mean, perfect example is myself with my ra markers, you know, I tested negative, but then we went through all this test, do additional testing, and I was very lucky to have a doctor who believed me. And I was showing all these very, like concrete signs, it was like check every box. And he's like, No, no, no, you you have all right. And when I went on the methotrexate also, you know, within two weeks, my symptoms were gone. And he's like, you can't argue with that. And he's a despite having, having negative tests. And he's and I said, How is this possible? I got my just some weirdo. He said, No, it can be 50% of the people who have rheumatoid arthritis aren't necessarily testing positive. Isn't that crazy? And I mean, that's insane, then ra is one of the only autoimmune conditions that we actually have concrete markers for, we really have a lot of testing that would indicate a definite yes or no in the direction of specific auto immune diseases. And so we've got a lot of work to do even, you know, not only in treatment, but also on the other side, right on the diagnosis side and using some of those diagnostic tools. And then in treatment, also some of those complimentary, you know, whether it be tech or food or nutrition, I think there's a lot to be doing on that side of things, too. I completely I made this transition to also speaking with an integrative physician, and it has changed my life. Dr. School, if you were listening changed my life. Because she really listened and looked at me holistically and we started to change my diet, we started to change a lot of different things and even just, you know, healthy supplements I was taking, and I just was living a more a fuller life as a result. Yes, yes, absolutely. And I think there's a lot of opportunity to marry some of the Western traditional medicine alongside nutritional choices and supplement choices that an acupuncture and some of that other stuff, whatever it was for you. I mean, I think that sometimes people can feel a lot of pressure to have to, like, totally transform their diet and never eat pizza and never eaten and that's it, you know, let yourself let yourself eat the cake, I believe is what you said. That's what I said. I know I'm not supposed to. Yeah, but sometimes, I'm just going to have to Have it and in your case, you're like I need to every once in a while I need to have that pizza. Yeah. And and that's the thing. Just because you're living with autoimmune diseases doesn't mean you cannot thrive. Absolutely. And I think that's what arta is really about is helping people go from diagnosis to thriving, and that just doesn't include the medical side, it includes the support to the community that you're providing, which I think is, well, you know how I feel about this. I'm very passionate. So I have a question, how have you, how do you feel that COVID? And we touched on a little bit, but how do you think it has impacted the autoimmune industry? And has it impacted the awareness of Arda? Yeah, now that everybody's talking about autoimmune, autoimmune, immune compromised? Yeah. So, you know, certainly, of course, it's COVID has really taken a unique toll on the autoimmune community, as we discussed. And I think that Arda has been able to step up, I'm really proud of our organization for the work that we've been doing to support patients during this time. You know, we were able to pull together a webcast with the CDC to provide information on on what COVID how it can impact the autoimmune community, we are going to be doing one around COVID-19 and vaccines as well, because I know that there's a lot of fear within our communities surrounding the COVID-19 vaccine and how that might impact autoimmune patients. raising my hand right here, yeah. Tune in to our two. Oh, believe me? Yes, we're, we're bringing the CDC and we're bringing, you know, physicians, we're bringing in a patient who I just a friend of mine that I saw yesterday evening, who she is also living with RA, and she did get the vaccine, and she's doing wonderfully and has added no side effects, no issues, which is great. So, you know, we're certainly we'll be talking about vaccine equity. And, you know, how that how that impacts the black community as well. And vaccine hesitancy there. So we're, I like some of those health equity issues, too. Yeah, that's another part that I wanted to bring up. And I just hadn't gotten to it is, when we talked about statistics, right, we said, you know, 50 million Americans. And that was a test. That was a statistic that we got a few years ago. So I'm not sure what it is at this point. And then we said 75% of them are women. How much of that 75% or even of the 100% are in the bipoc community? Well, Angie, the unfortunate answer to this is that we don't have accurate statistics around that. And part of that is because people in the PLC communities are more likely to go undiagnosed. Because, you know, you you get so emotional with the fact that women are not taken seriously by the health care system. often they're they're dismiss, or they're disbelieved, but amplify that for black women, right? I mean, and Latin x community. That's just the reality, unfortunately. And so I actually don't have a direct statistic in there is probably one that exists. But I have to say that it's very likely not accurate, it's probably a lot fair, it should be higher than whatever it is. And that's a reality, again, as we start to talk about what the pandemic is bringing up and also being in the midst of a civil rights movement. But again, it just, again, amplifies the need for us to raise awareness and provide support and help so that in those marginalized communities, they can get the diagnosis that they deserve, and then have access to the health care that every human deserves. Absolutely. I could not agree more. You know, it's something that health equity is so important to myself, it's important to the audit team. We're working to and health equity across from PLC communities to folks who are in a lower socioeconomic status, as we looked at with this pandemic, how it's forced all of us to go virtual. There are a lot of people who you know, maybe for you and I MD it's been easy for us to make that transition because we have access to reliable Wi Fi. But there are a lot of people who one of our colleagues at Arda, her husband is a teacher, and in his his community where he teaches only 30% of the children had access to Wi Fi when they needed to go to virtual learning. So this is a reality in our in our country in our world. And there is more that we want to be doing. So we're trying to focus some time and energy on these what I like to call boots on the ground initiatives with Eon towards really getting into communities and delivering some of these resources, the old fashioned way via you know, a magazine or a or a pamphlet, however you can, because if they don't have internet, they're not looking at websites, you know, maybe social media, which is how I certainly am planning on trying to make as much of an impact as I can with you. But there's a lot of work to be done. And so you have a lot on your plate. I honestly don't know that you sleep? Well, we'll have that question that conversation offline. So it's clear to everybody listening, how you took your passion and made it your purpose. But how do you stay present? And how do you take care of yourself when you have so many things going on? I love this question. And more people should really ask it because we should be encouraging more of this work life balance, I will say, I like to think I'm really good at work life balance, I am a great sleeper I value sleep, I try to get me hours every day I having an autoimmune disease, or I'm sorry, autoimmune diseases, has forced me to take good care of myself, right? Because if I don't, then I'm risk flaring. So I prioritize sleep, I prioritize eating healthy with my cheat meals on this side. But I also to stay present. That's actually a priority of mine this year. It's something that I truthfully haven't done well in my life being a type A personality, and always be like, what's next, what's next card carrying. But I but I checked this box, so on to the next thing and thinking about the future. And I am like I need to live my life I need to be more present in because you just you never know when your last day will be. And that was something that I had a teacher in high school who always said and I it's always stuck with me. And so I'm trying to really be more in the moment. And some of the ways I'm doing that this year, I've actually made a vision board. And I say spend some time with it every morning and part of what Oh, you are making my heart is being present with that. And gratitude. So having a gratitude journal. So that's how I've been starting my day. And I have to say that really positive. I'm so proud of you. Yes. That's fantastic. You know, I talk about it all the time. And that's why I do mindful Mondays on Instagram. And people are like, this is weird that a beauty factor is doing a mindful Monday. But the truth is, all we have is right now, yes. And that's why I'm so committed to helping raise awareness so that people can have and thrive in the now. And so I'm so happy to hear that like gratitude journal vision board. I do. Listen, I meditate every morning and every night. I write affirmations or say my affirmations every day I do visualizations every day. I've really started to take my mornings and wake up really early. So I have time to prioritize me and work on my own self development. Like how can I continue to grow if I'm not making time to develop myself? I love that. meditations on my list next. I really I've struggled with that one, but it is some everyday I struggle with it. That's I think that's the purpose. Every day, although lately because I've been so consistent. I'm getting into that hum section where I'm like, Okay, I think I just quieted my mind. I think my body is actually like, I can feel it humming like vibrating. This might be okay, but then I go out of it. But that's that's the practice. It's just you learn how much we have in our minds and actually how unkind we are in her mind. So ourselves. Yeah, so I so it's good to hear you say that because every time I sit down to do it, I'm like, I can't do this. I don't have the right. Yeah, I think we're similar in personality. Yeah. Oh, God. So it is on my list, though. Oh, and exercise. I love to workout. So that's okay. That's one thing that I have not mastered. But we're getting there. We're getting I love it. Well, I have a workout class that it's amazing. It's called bar groove. And it's everybody has their own trampoline. And it's a mix of trampoline and bar. And so I'm obsessed with it. That's it. That's what I hear. When someone finds it. They become obsessed. And that's how they incorporate it and it becomes a habit and certainly a habit I need to start working on. I know, I know I'm going to do. So Lee, thank you so much for spending time and giving. I know how valuable Your time is. And I don't know how you squeeze me in. But thank you. How can people find you and the work you're doing? Thank you indeed. Well, thank you because I know you're super busy. So thank you for dedicating time to the autoimmune community. So you can find Arda First of all, we're on Twitter, Facebook, Instagram, we're at art a.org and we're at autoimmune diseases on Instagram. We're out Arda tweets on Twitter, and then you can find me on Twitter at Lilly stairs Lily with two L's and stairs like going up and down and you can find me on Instagram at patient authentic Which is a business, my consulting company where I build programs to help empower and educate patients. And I will make sure all this is in the show knows. Lee, thank you. Thank you. I truly appreciate you and everything you're doing. Thank you Andy right back at you so glad we can collaborate