Leila's Melodic Journey

Leila's voice crackles with emotion as she recounts the moment her life took an unexpected turn with the diagnosis of Lupus and Sjogren's disease. Her candid narrative details the trials and triumphs of living with these stealthy autoimmune diseases, from the early signs that something was amiss to the latest treatment that's been her saving grace. We're honored to have her on our show, sharing invaluable insights into the world of chronic illness, emphasizing the importance of self-advocacy, and the intricate dance of managing health care with a condition that refuses to play by the rules.

Our conversation takes a heartfelt detour through stories of resilience that bloom in the face of adversity and the incredible journey working for AiArthritis. We hear how a simple melody, the support of a spouse, and the companionship of a furry friend can bring solace to aching souls. The episode weaves tales of personal transformation, from career changes that resonate with purpose to the empowerment found in the communal embrace of fellow warriors battling autoimmune diseases. Join us as we celebrate the spirit of community, the power of education, and the collective voice raised during awareness initiatives, shining a beacon of hope for all those touched by the shadow of lupus.

www.instagram.com/lupus.lifestyle.lei

www.tiktok.com/lupus.lifestyle.lei

https://linktr.ee/lupuslifestyle.lei

www.aiarthritis.org

www.aiarthritis.org/aiarthritisday

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:42 Living With Lupus and Sjogren's Journey
• 9:56 Connecting Through Community and Education
• 21:03 Lupus Awareness Initiatives and Events

Transcript

Jen: 0:42

Welcome everyone to another episode of my Spoonie Sisters. Today we have a very special guest with us. This is Leila. Leila is not only a remarkable individual, but also a strong advocate for those living with autoimmune diseases, particularly lupus and Sjogren's disease. So welcome to the show, hi Leila.

Leila: 1:03

Hi everybody. I am so happy to be here and thank you so much, jen, for inviting me to be on this podcast. I've known you for about a year now, so I've been waiting to be on the podcast and I'm so excited that it's finally happening.

Jen: 1:17

Oh my gosh, it's my honor. I'm just so excited to have you here. So let's dive right in. Could you share a bit with our listeners about your journey of living with lupus and Sjogren's? What does your treatment care plan look like to go along with that?

Leila: 1:31

Yes, so my story actually begins. When I was nine years old I was diagnosed with immunothrombocytopenia, which is also known as low platelet count. Now, in more recent years, in the past five years, it is shown to be a precursor or a comorbidity as well, to lupus, and so I didn't know that back then, that I was dealing with an autoimmune disease, but that's kind of what it led to. So once I was able to cure that immunothrombocytopenia, they saw lupus markers in my blood so they sent me to a rheumatologist. I was at the rheumatologist for about three years until I developed enough symptoms. So you need four out of the 11 criteria for lupus in order to be diagnosed. So we had three for a very long time and then the fourth one kind of popped up when I finally got diagnosed at 12 years old. So I was diagnosed with lupus at 12 years old. It was very controlled with just Plaquenil. I was taking 200 milligrams of Plaquenil from when I was 12 years old until I was 18. No huge flares would maybe get a little tired and sick here and there when I was stressed because of school or anything like that, but it was kind of very benign for a while.

Leila: 2:54

And then when I turned 18, the summer before I moved to college, I got a viral infection. Of course, everybody talks about those triggers. You know what it is. So that viral infection was my trigger. It caused my immune system to go into complete haywire. I had some nerve damage for a little bit and I was put on a really high dose of prednisone two weeks before I moved in to college. So I decided to still stick through. I did the whole find your new doctor thing and find a rheumatologist and get treatment on my own as an 18 year old, moving from Northern California to Southern California by myself. So that was a big, a big test. And hey, can you be an adult? So that was my can you be an adult moment. And finally, so that was August of 2014.

Leila: 3:48

And then, in October of 2014, I started Benlista, which has been my life-saving and life-changing biologic that I've been on on and off since then. So for about 10 years I've been on Benlysta and it's been a life changer. So right now I'm on currently in the infusion version of Benlysta, but I have been on the subcutaneous injections before. Either way, it has made my fatigue significantly less, my joint and muscle pain significantly less and, yeah, that has been my one big thing that I have for my treatment plan. Otherwise, right now still on Plaquenil 400 milligrams, but have been thankfully off prednisone and any other steroids for about three years now, except for when I have issues with my lungs and my asthma. That's the only time when I ever go on prednisone again. So right now I take Benlista, the Plaquenil and, of course, d3. A lot of autoimmune patients have to take the D3 and I even recommend it for anybody out there, to be honest, because we all don't get enough sun. So D3. And other than that, yeah, that's my treatment plan right now.

Jen: 5:05

Okay, so you mentioned Plaquenil. Has that affected your vision at all?

Leila: 5:11

It has not. I also have to admit that I have not gone to the ophthalmologist in the past year and a half, but I have been on Plaquenil since I was 12 years old and I have not had any issues with that. So it's been about 24, sorry, 14 years since I've been on Plaquenil.

Jen: 5:28

Wow, that's incredible. And so you've gone through this entire journey, and it sounds like a challenging road to navigate at such a young age. So when did the Sjogren's come into play?

Leila: 5:41

So the Sjogren's I actually got diagnosed January of 2023. So just last year. I should have been diagnosed, probably a long time before that, and I had no idea why I was having such bad dry mouth and a lot of other dryness issues like dry skin, but I also have eczema. So I was confused on whether it was eczema or just regular dry skin or what was happening. And, yeah, once I found out about Sjogren's, I asked my rheumatologist to test for the antibody and, lo and behold, it was present. So I got diagnosed last January, but I have a suspicion that I've had it for at least five years or so. So how do they treat that? So it's hard because there isn't any medicine that is really completely just for Sjogren's.

Leila: 6:45

A lot of the medications that people may use to treat Sjogren's symptoms are. Benlista is one of them. So I was already on it. That's what my rheumatologist said that the Benlista should help take care of the Sjogren's at least from it, you know, progressing more. But in terms of the symptoms of dryness, it really is treating the symptoms and not treating the underlying condition at this point. So just a lot of eye drops, dry mouth spray and making sure to stay hydrated all the time so I can at least prevent that part from you know affecting all of that. But yeah, there really isn't too much, you know, going on with medication just for Sjogren's. But I think there are some things in the pipeline so hopefully in the next few years there'll be some dedicated medications to help with Sjogren's. But a lot of people don't know that it is a lot more systemic than we think sometimes and that it does affect your nerves, your neuropsychology and a lot of other parts of the body, just as a lot of our other autoimmune diseases do as well.

Jen: 7:59

Wow, so what kind of advice would you have for a fellow Spoonie sister that is maybe at the more beginning stage of getting a diagnosis?

Leila: 8:08

The first thing that I would say is I'm so sorry that you're going through this, because it is so hard to deal with, especially when you have to deal with regular life, like if this person may be a mom, you know, a completely a career woman. It's. It's hard to deal with at any stage of your life, but especially when you have other people depending on you. So my biggest advice would be to give yourself grace. That's the biggest thing is that I was just in a flare for about two or three weeks and the garbages weren't taken out. The floor is not swept and sometimes we put you, sometimes we put a lot of pressure on ourselves to get those things done, but sometimes you have to worry about your own health and your and your own mental health first before worrying about those things. So, um, that's the biggest thing is to give yourself grace.

Leila: 8:58

Um, the second thing would be to find a community, whether that be the MySpoonie Sisters social media, whether that be any other patient organization that has to do with your specific possible diagnosis, or if you really don't know what you might have and you do have autoimmune or autoinflammatory symptoms and you have joint pain and muscle pain and other arthritis symptoms, then the AI arthritis community might be the one for you especially those mystery patients or people awaiting diagnosis because you get to meet other people with all the other diseases that it could possibly be, whether it be rheumatoid arthritis, psoriatic arthritis, axspa, lupus, different things like that. So finding a community online or even in person can really help as well, because your friends and family can be there to support you and give you as much love as they can, but they can't really fully understand what you're going through, like the other people in the community can.

Jen: 9:56

Absolutely. I could not agree with you more and for you at such a young age going through all of that. Did you find a community at the time?

Leila: 10:07

age. Going through all of that, did you find a community at the time? I didn't. I this is my first time actually being part of a community. I think, um, everything that happened in 2020 also made things a lot easier for us to um, get together and, and you know, have a mass like a you know combination of the minds. But, um, yeah, I did not partake in in much of the mind, but, yeah, I did not partake in much of the community. I did have one program that I took part in. It was called the Lupus Buddy Program and it was through Lupus NorCal, and so I do have a friend on social media that I did meet through that program, but that's kind of the only thing that I did before I joined AI Arthritis in 2021. Sorry, 2020.

Jen: 10:52

Okay, so where's my other question? Sorry, I lost it. It's right here somewhere. Oh, yes, Okay. So who or what lifts your spirits on your difficult days?

Leila: 11:01

Let's see who or what lifts my spirit on a difficult day. I have been a singer and a performer my whole life, so that's kind of something that I go back to. A lot is just listening to music and singing my heart out whenever I am having a bad day, not feeling well or anything like that. I actually learned from my therapist that singing actually physically does help calm you down because you are forced to control your breathing. So I don't do a lot of just normal breathing exercises or breath work, but I use singing as my breath work to kind of help me to calm down. So that helps calm me down. And also I've had my little doggie now for about a year and he's really been a big emotional support for me and as well as my husband. He's always there to make me laugh and to help me get my mind off of things when things are going bad. So I think those are the three things singing my dog, Rocco, and my husband.

Jen: 12:06

I love it. Those are all great, okay, so what is your favorite song?

Leila: 12:11

Oh, that is a hard question right now or for for the past few years, my favorite artist has been Janae Aiko. She's an she's an R&B singer. She started out doing, you know, just kind of normal R&B music about love and all those different things, but recently she's gone into the space of more like meditation and sound baths and healing music. So her newest album has all of like sound baths in the background of all of her songs. So all of those really helped me to calm down, and doesn't hurt that her voice is very soothing as well. So yeah, if anybody hasn't never listened to her, jene Aiko has been a really good addition to my life the past few years.

Jen: 12:54

I'm going to have to go check that out. Ok, so, as you talked about, you're involved with AI arthritis. How did that happen? How did that happen?

Leila: 13:03

Okay, so we talk about like everything that kind of came about in 2020. So I had a job where I was helping seniors with finding housing and there was just it became too salesy for me and I wanted to do something to help people. Like when I went to college, I went to college to be a nurse and then, when everything happened with my lupus, I decided that that wasn't the best place to be in like a hospital at that time. So I studied community health education. So that's what I really wanted to do. Like it's so hard to make money in the nonprofit sector and things like that. But the opportunity with AI arthritis kind of fell into my lap. I ended up quitting that job in August of 2022. And then it's September 2022, I ended up applying for the position of executive assistant at AI arthritis because that's what I was trying to do was building my own virtual assistant business.

Leila: 14:09

But as I had the interview with Tiffany our CEO she really was she was like you know, you have a degree in community health education. Is that what you want to get, get into in the future? And I was like I've always wanted to, but I never really pursued it because I kind of already started in the senior care. When I did do that interview with Tiffany, she was like I really think that I want to hire you on as health education and we'll see how that goes because I already have someone else for the executive assistant position and I think that you would be better suited with your skills in the health education department.

Leila: 14:44

So Tiffany took a really big risk with me, helping me to get to the position that I'm in, and I applied as an executive assistant and almost two years later I'm here as the health education manager. She's really empowered me to. I feel like sometimes I do feel like I need to take a step back because of how young I am. I'm 28 and to be a health education manager for a nonprofit organization at this age is not very common, and so Tiffany really has helped to empower me to tell my story and to help everybody else as much as I can understand their diseases and feel like they have a community. So yeah, that's kind of how I got started and we've gone a long way since then.

Jen: 15:35

That is fantastic. So can you kind of explain what that role exactly means?

Leila: 15:41

Yes, so I'll go a little bit and just to what AI arthritis is first, and then I'll explain my role. But so AI arthritis is an acronym for the International Foundation for Autoimmune and Autoinflammatory Arthritis, and basically we are a patient run organization that focuses on advocacy, education and research for about 27 different diseases under our umbrella that are autoimmune, autoinflammatory plus arthritis, and so, yeah, basically the three main sectors that we have is advocacy, education and research, and so my position under education is to help create resources and different programs that help patients basically understand their disease better and understand, you know, a lot of the different things that come with the disease, whether that be mental health, self-care, exercise and diet. Any of those different, like kind of like separate parts of life that do blend into having our diseases is what I focus on helping to provide education and suggestions and tips and tricks for.

Jen: 16:57

That's pretty cool. That's a lot.

Leila: 16:59

That's a big job it is. It is a really big job. I also love being able to involve all the volunteers, and that's how me and Jen have been able to kind of communicate. More and more is through her being a volunteer with AI Arthritis as well, so we are so thankful to have Jen here as one of our AI Arthritis volunteers, but not just that, but also bringing her community to know that we are, that we exist as well, and so I think that that's been really helpful, and hopefully it's been helpful the other way around, as we are able to help promote your podcast as well, and we've had other volunteers on our on your podcast too.

Jen: 17:39

Yeah, and honestly it's been such a pleasure. I don't even know how I didn't know about AR arthritis before. Such a pleasure. I don't even know how I didn't know about AR arthritis before, and once it kind of came into my life, I can't imagine anything different, and all the amazing people that we know from this. If you're not familiar with it, if you like volunteering, I absolutely recommend getting involved. There's something for everyone.

Leila: 19:08

Yes, and our slogan for volunteering is all the activities that we ask are couch approved. So anybody that wants to volunteer, even if you're younger and you want something for your resume but you do have one of these autoimmune or autoinflammatory diseases, our volunteer program is very adaptable and we will find something that works for you and your skills. So, yeah, that would be amazing. If any of you would like to join us, you can go to our website at wwwand you can find all the information there.

Jen: 19:45

Absolutely Okay. So there's a whole bunch of events coming up here for the whole month of May. Can you kind of walk us through what this month is going to look like?

Leila: 20:01

Yes, so the biggest thing that we do have going on is World AI Arthritis Day, which is May 20th, but it is May 20th as it crosses through all time zones in the world, so it's 47 hours and it is from 6 am on May 19th to 5 am on May 21st, and we are doing a race-a-thon live stream. So it's basically like a telethon to help raise money for our organization, but it's also mostly to promote and drive awareness for all of our diseases and we are partnering with different patient organizations and patients and advocates to create educational content for eight straight hours and it's going to be on Facebook. You can find our event page for that on Facebook and we're going to be doing an eight hour live stream and it's going to have basically clips and videos from all the different patient organizations throughout the world, and so that is one big event that we're holding as AI Arthritis. I'm also on social media platforms like Instagram and TikTok as Lupus, so I post a lot about my lupus and my lifestyle, so everything else about my life, and I am trying to do a bunch of different initiatives for that day or for Lupus Awareness Month as well in May. So I'm going to be holding a panel on TikTok because it's also AAPI or Asian American Pacific Islander Heritage Month next month and I am Filipino, so we are going to be talking about how the AAPI community is affected by autoimmune diseases but also by obesity and things that have to do with that, because I also have had gastric sleeve surgery to kind of help with all of my different comorbidities that have come out from lupus. So that's going to be a really cool panel. You can check out my social media lupus on Instagram and TikTok for updates on when that will be.

Leila: 22:09

I also have special merch coming out that is for AAPI and Lupus Awareness Month and the brand is going to be called Beyond the Surface. I think all of my spoony sisters out there will kind of understand what that means, but it's a nod to invisible disease, that you may see what I look like right now, but you have no idea what might be going on beyond the surface. So my goal for this new merch brand is going to be to make it more streetwear friendly, that anybody who might want to pick it up can wear it. They don't have to know that it has to do with lupus awareness or AAPI month or invisible disease, so that they can just wear it around and if anybody does ask what it means that they can just wear it around and if anybody does ask what it means, that they can know what it means and explain it and kind of bring awareness. So that is another big thing that will be premiering in May as well, as I am starting to promote my coloring book again, which is coloring or it's affirmations and coloring. So it's a beach themed coloring book that's meant for all ages, from two years old all the way up to a hundred years old. It is beach themed as well, as on each page there are affirmations for you to basically recite while you're coloring in order to promote that in your own life. So some of them are I am strong. You know my body is capable of doing what I need it to do. A bunch of different affirmations to help with self-care and self-love Also has some quotes in there that you can color from famous people saying inspirational quotes. So if you'd like to check that out, the link is in my bio on those two social media platforms that I am active on.

Leila: 24:02

And lastly but not least, we do have other awareness days and awareness months going on at the same time there is Axspa Awareness Month, or Axial Spondyloarthritis, and so we are going to be participating and having a booth at the Axpa Educational Summit in the first week of May. I'm also going to be having a booth at the it's a Filipino club for colleges, like their summit, it's called SC PASA at UCLA on the 5th of March Sorry, I'm like I mean it's on the 5th of May is when that's happening, so I will be. Basically I'm going on a tour of all different colleges to let them know about our diseases Because, for those of you who don't know our diseases, the average onset is anywhere from 15 to 30. So that is typical college age, and we want to let those college students know about our diseases so that they can get earlier detection, earlier diagnosis and earlier treatment and therefore have more positive outcomes for their disease in general. So that's one of our initiatives for this year as well. So that is what that is part of, and I don't know if I'm missing anything else, but that's kind of the biggest.

Leila: 25:27

Those are the biggest things going on, and I would really love to see all of you tune in to our World AI Arthritis Day Race-a-thon. Like I said, on May 19th it's going to be from 8 am Pacific and it's going to be for eight straight hours, so 8 am to 4 pm, or there's also going to be a link there so that you can see, if you're in any part of the world, what time that's actually going to be for you, because it can get very confusing. Time zones are very confusing for me. So yeah, but yeah, that's kind of the biggest thing going on and we may even have, you know merch on our store. That's special for World AR Arthritis Day too, so we're excited to premiere that. So we will be having new shirts premiere as well, so that's going to be great.

Jen: 26:20

I'm just so excited for all of it. I can't wait. There's so much going on. There is so much going on. It's a big, big month and I will make sure that we have all the links available in the show notes. And also let's remind listeners that they can go check you out and a lot of amazing other people from AI Arthritis on the podcast as well.

Leila: 26:39

Yes, so we do have a podcast called AI Arthritis Voices 360. You can also find that on our website. I am one of the hosts, and so we're actually going to be having an episode premiere around the same time that this episode is going to premiere about more details about World AI Arthritis Day and what's going on with the race-a-thon and things like that. But if you're looking for any educational content and wanting to learn more about the patients that have our diseases and the different issues that we go through, you would love to find all of the other podcast episodes that we have. There's so many. I think we're up to episode 97 this month, so there's lots of content there for you to explore and see. So thank you for mentioning that. But yeah, ai.

Jen: 27:33

Arthritis Voices? Absolutely, and thank you so much, leila, for taking the time to be on here and to share your story and all of your work too.

Leila: 27:43

Yes, thank you. I really appreciate it and I'm so excited for you all to hear more about this. And if you have any questions or would like to connect with me, I go live on TikTok throughout the week, so you can see me there. I know that we don't know what the status of TikTok is going to be for the next few months, so if you want to go ahead and follow me on both Instagram and TikTok, I would really appreciate that. It's at Lupus, so thank you so much for having me again today, jen.

Jen: 28:14

All right. Well, I think we've covered everything. I mean, I feel like we went super fast, but we got it all right. I think I just talk really fast. That's why You're in good company. You're in good company, all right. Well, thank you for your time and my Spooty sisters. Until next time, don't forget your spoon.