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Summary:
Laura shares her personal journey with a generalized diagnosis of inflammatory arthritis and hidradenitis suppurativa, a more rare autoimmune disease. Chery and Laura discuss the importance of connecting with others in the autoimmune community to create a sense of belonging and empowerment.
They delve into the diverse offerings at the Autoimmune Association’s upcoming event: the Autoimmune Community Summit. This includes sessions on managing pain and fatigue, communicating with healthcare teams, and exploring dietary strategies, all aimed at empowering patients with autoimmune conditions.
Throughout their conversation, Cheryl and Laura underscore the pivotal role of community and empowerment in thriving with autoimmune diseases, making it clear that the Autoimmune Association’s annual summit is a place where patients can find connection, knowledge, empowerment and support on their autoimmune journey.
Episode at a glance / Main Themes:
- Patient Experiences: Laura shares her personal journey as an autoimmune patient, highlighting the challenges and lessons she has learned over the years.
- Autoimmune Disease Advocacy: The conversation revolves around the Autoimmune Association and its mission to support, educate, and empower individuals living with autoimmune diseases.
- Community and Support: Both Cheryl and Laura emphasize the importance of building a supportive community for autoimmune patients, allowing them to connect, share stories, and find empowerment.
- Autoimmune Community Summit: The discussion centers on the upcoming Autoimmune Community Summit, an annual event organized by the Autoimmune Association, where patients can access valuable information, connect with experts, and share experiences.
- Lifestyle interventions: The conversation touches on the challenges of managing autoimmune diseases, particularly the complexities of dietary choices and lifestyle changes.
- Patient Education: Laura mentions various sessions at the summit focused on educating patients about autoimmune diseases, the latest research, and effective communication with healthcare teams.
- Empowerment Through Connection: Laura highlights how connecting with others who have autoimmune conditions can be empowering and reduce feelings of isolation.
- Living a Good Life with Autoimmune Disease: The conversation concludes with a discussion on what it means to thrive while living with autoimmune conditions and the role of community and support in achieving this goal.
Medical disclaimer:
All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Episode Sponsors
Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!
Speaker Bios:
Laura Simpson is the Chief Operating Officer of the Autoimmune Association where she oversees organizational operations and strategic initiatives in mission, impact, and stakeholder relations. As an autoimmune patient, Laura is passionate about improving healthcare, empowering patients, and driving innovation in the autoimmune community. She holds a Bachelor of Science in Economics from Brigham Young University and a Master of Business from Western Governors University. On the weekends, Laura enjoys hosting gatherings, traveling, and exploring new places with her husband Dave.
Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Speaker Links & links to things discussed in the episode:
- Cheryl’s Arthritis Life Pages:
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl Crow (00:00):
I’m so happy today to have Laura Simpson, who is the Chief Operating Officer at the Autoimmune Association, which we are going to learn a little bit more about today, and also her story. So welcome, Laura. Thank you so much. And can we start by just letting us know a little bit about where you live, and what is your relationship to autoimmune disease?
Laura Simpson (00:20):
Absolutely. And first off, thank you so much Cheryl for having me. It’s an honor to be here. I really love any opportunity to talk about autoimmune disease. So I live in Michigan, which is a really great place this time of year. I love the fall. Winter, not so much. And I have a few connections to autoimmune disease. So I myself have two autoimmune related diseases. So I live with inflammatory arthritis and hidradenitis suppurativa, or better known as HS. And both my family and my husband’s family are riddled with autoimmune disease, as we find with so many people living with autoimmune diseases, as they tend to cluster not only in individuals, but also in families.
(01:10):
As you mentioned, I’m also the Chief Operating Officer of the Autoimmune Association whose mission is to lead the fight against autoimmune disease by advocating and collaborating to improve healthcare, advance research, and empower the community through every step of the journey.
Cheryl Crow (01:29):
That’s incredible. And I’m sure it’s just so rewarding to be able to bring some of your patient experience to your work at the association. How long have you been there?
Laura Simpson (01:43):
I have been there for about six and a half years. And it’s interesting, because a lot of my autoimmune experience in terms of the diagnoses have happened while I’ve been here. And I will say that our incredible patients and patient advocates in the community have really helped me to find my own voice within autoimmune disease, and seek to find my own diagnoses.
Cheryl Crow (02:07):
Wow. Well, you’re leading me perfectly to the next question. I always like to hear about people’s diagnosis story, or diagnosis saga as we sometimes call it. So how and when did you get diagnosed? What were some of your first signs?
Laura Simpson (02:25):
Yeah, that’s a great question and saga it is. So I have suffered from pain and fatigue really since I was a child. And I remember knowing when the weather was going to change because my right ring finger, without fail, would hurt. And I would tell my mom this, and she would just say, “Oh yeah, that’s just arthritis.” So I literally grew up thinking that arthritis was a completely normal part of life. A normal part of childhood. And I love my mother. I know she was doing the absolute best she could with the information she had. Looking back, I do wish that we had mentioned the symptoms to my doctors when I was younger. Again, I just thought that the pain and the fatigue was a normal part of life, and that I just didn’t push through it as well as other people.
(03:19):
Fast-forward to my 20s and 30s. And by this point, I had lived enough to know that it was not a normal part of my life, and I told countless primary doctors about my pain and my fatigue. And they would run some tests, but honestly nothing changed. No one ever mentioned rheumatology, or seeing a rheumatologist, or anything related to the joint pain and some of the fatigue and brain fog that I was experiencing.
Cheryl Crow (03:53):
Yeah. And I just want to jump in really quick and say how common it is for people to blame themselves, like you said. You thought, “Maybe I just wasn’t pushing through. Maybe I just need to try harder.” Or something. And it’s just so tragic to know that your body was riddled with inflammation at this time, but no one knew how to diagnose it at that time or didn’t do the right tests. And so my heart goes out to little you and anyone else listening who’s in that same position. And I think it’s just a little teachable moment, but it’s really important to trust your body. Because I did a similar thing where at first I was like, “Well, it must just be… Maybe I didn’t sleep enough, or maybe I need to…” And I wish I had trusted my body a little more and advocated for a diagnosis earlier. But hindsight is 20/20, as we say.
Laura Simpson (04:55):
Exactly. And this is so common. And I do think that there’s a lot of work and advocacy and awareness to be done on the healthcare side as well working with primary doctors. We find this particularly in rural areas where people may not have access to specialists. And I find some of the heroes, the people that really diagnose autoimmune disease, within their family practices. So certainly a lot of work to be done there. So onto the journey. So once I started having more specific and really more debilitating pain, unfortunately, is when I started to seek more and more answers. And so it started in my left foot.
(05:46):
I was having difficulty walking really around the same time, which is kind of fascinating. I was having really bad pain in my jaw. And I also had some issues with my left knee perhaps from compensating from the foot. So I was referred finally to some various specialists, and I had imaging done and on all three occasions. So the podiatrist, the orthopedic surgeon, and the jaw specialist all came to the same conclusion, which was that my scans indicated arthritis. And at this point I was finally referred to a rheumatologist who pretty quickly diagnosed me with inflammatory arthritis.
Cheryl Crow (06:34):
Wow. Yeah. So you had been having pain for two decades, is that right? Yeah.
Laura Simpson (06:40):
Yes, yes. Two to three decades. Yeah.
Cheryl Crow (06:43):
And I mean, I’m so glad you finally got that diagnosis, but it’s so heartbreaking to think of maybe it wouldn’t have progressed as much if you had gotten identified and treated earlier. And when you said the doctor diagnosed you with inflammatory arthritis or indicated that earlier, it is something that’s come up recently in the room to thrive support groups a few times where people are like, “I don’t understand. Is this just a placeholder diagnosis?” Was it hard to wrap your head around what that diagnosis meant because it wasn’t rheumatoid specifically or psoriatic or ankylosing spondylitis?
Laura Simpson (07:25):
Yeah Cheryl, that’s a great question. I think it’s something that I’m still wrapping my head around if I’m honest. I think working in the autoimmune community, it was really easy for me to think, “Oh. It’s rheumatoid arthritis or something else.” All of my tests, while they indicated the inflammation side, my rheumatoid factors came back normal. And it’s a weird place to be because you almost feel like an outsider or just kind of generalized inflammatory arthritis.
(08:01):
But I will say, the more I talk about it and the more I hear about other people’s experiences, the more I feel validated and like my experiences is more common than not. And even though I don’t have specific markers that tell me exactly why I have this inflammatory arthritis, there are tools and there is medication available that has helped me significantly to change my life.
Cheryl Crow (08:35):
Yeah. I would love to hear a little more about that before we move on to your work at the Autoimmune Association. What have been some of the treatments that have been super helpful?
Laura Simpson (08:45):
Yeah, that’s a great question. So I started a biologic several years ago now, and I cannot believe the difference that it’s made. I mean, the fact that I now get tired and I get forgetful, but it’s different than fatigue, it’s different than brain fog. The fact that I’m able to stay awake throughout the course of the day, remember important things, those have changed so significantly along with my ability to be in so much less pain. I didn’t end up needing surgery in my knee or my foot. My jaw still hurts, but everything else really has helped tremendously.
(09:29):
But along with medication, really being able to listen to my body, to learn how to walk, physical therapy was a really important part of it as well. And then really the mental health side of it, making sure that I’m taking care of myself and my body. And I think there’s certainly a diet and exercise component to it as well. So the medication is important, but it’s really an all encompassing lifestyle change to make sure that I’m able to feel my best and get through the day the best I can.
Cheryl Crow (10:11):
That makes a lot of sense. And when you were first talking about your really positive, strong response to the biologic medication, when we say biologic, it’s shorthand for biologic DMARDs or disease modifying anti-rheumatic drugs. So it’s one of the many acronyms, and that is actually sometimes how the doctors are able to determine is it truly some sort of inflammatory, which for the sake of brevity, we could just say inflammatory arthritis is interchangeable with an autoimmune or auto inflammatory process causing the disease versus a mechanical osteoarthritis associated with aging. Although now, I don’t want to say wear and tear because they’re not calling it wear and tear anymore for osteoarthritis. But just a little teachable moment for somebody listening, I always try to define the terms and try to remember like, “What was it like before I knew what-” Even RA as a shortening for rheumatoid arthritis.
(11:10):
I’m sure I don’t always remember to define it. But yeah, if for example, they suspected you had some sort of inflammatory arthritis and you had no response to prednisone or a biologic, then they might be like, “Hmm, let’s go back and see what else it could be.” Sometimes people will tell me, “Well, they gave me a medicine to just try to see how it responded.” That seems like such imprecise medicine. And it’s like that doesn’t mean that your doctor’s blowing you off. That is a standard process, and that’s just the best that our health system can do sometimes.
(11:45):
So you’re an example of it working the success story, which is obviously wonderful. And like you said, combining your lifestyle variables. It’s certainly not an either or, it’s a both and. And I’m glad you mentioned the fatigue and brain fog. Because so often when people hear arthritis, their brain, so you’ve been working at your foundation longer than I’ve been doing arthritis life that they just think, “Oh, joint pain.”
(12:12):
But like you mentioned, fatigue and brain fog, those things. I’m just going to say off of my only my own anecdotal experience, I just started an exercise strength training program in the beginning of September. And it’s the end of September now, and I’m shocked at specifically the brain fog improvements Like my focus, my ability to focus, get things done that I started, and word finding and stuff like that has gotten a lot better over the last month. And a little bit the fatigue as well, which that does track with exercises and evidence-based intervention for those things in addition to the joint pain improving slightly. But the more dramatic improvement has actually been in those kind of more systemic cognitive symptoms, which is interesting. Anyway, that’s just my story.
Laura Simpson (13:03):
Yeah. No, that’s great. And honestly, one of the things that keeps me motivated is to ensure that I’m kind of sharp. And so sugar, I will tell you is one of my biggest triggers, and-
Cheryl Crow (13:16):
That’s sad. I’m sorry.
Laura Simpson (13:19):
I know. I’m telling you, if I eat sugar, especially on an empty stomach. 20 minutes later, I’m in a total haze. I’m just in this cloud of haze. And so for me to know that I still want the sugar, but I just have to remember, “Nope, I want to stay sharp. I want to kind of function to my best ability.” And so for me, avoiding sugar is a big part of it which I don’t always do. But again, moderation.
Cheryl Crow (13:47):
Yeah. And you have to weigh the cost benefit analysis of quality of life and stuff like that too. Because I do think, yeah. Depriving yourself of something that brings you joy is not always super healthy either, unless it’s something like gluten where if you have celiac disease, obviously you do have to be really strict, you know?
Laura Simpson (14:04):
Yes, exactly. My husband actually has autoimmune celiac, and so he follows a gluten-free diet. I actually started it hoping it would help me. It didn’t.
Cheryl Crow (14:18):
Me neither. Sorry. I do gluten-free, but not for my rheumatoid arthritis. It helps my GI bloating not to be like TMI. But yeah, I have IBS. I know it’s kind of like a general catchall, irritable bowel syndrome. So a long time ago diagnosis of gastroparesis, which is in the dysautonomia family, but that seems to be to me in my body periodic. It’s not a constant. Like, I’ll have flareups of like, “Ooh, I’m not digesting very fast.” But I was always bloated. I just thought that’s how stomachs felt. And I was like, I guess I’m just a wimp. Because every time I eat, I feel crappy. But oh well, I have to eat to survive. And then when I went gluten-free, I was like whoa. And anyway, sorry. Sorry. So back to your husband.
Laura Simpson (15:07):
No. And I know it works for many people. I’m glad you’re mentioning the gut issues because there is so much overlap that we’re still trying to identify. But certainly the gut and gut issues can plague a lot of these areas and these symptoms, and it’s kind of a vicious cycle again to make sure that our bodies are operating at full speed.
Cheryl Crow (15:35):
Yeah, it’s so true. And I will say this is anecdotally connecting the dots. But when I got accurately diagnosed and treated, I got diagnosed in 2003 with gastroparesis first. And then end of 2002 diagnosed with gastroparesis. Middle of 2003, diagnosed with rheumatoid arthritis. When I got on fast track to methotrexate plus Enbrel and my RA went into remission, my stomach got so much better. I lost like 30 pounds off of a pretty small frame, and then I gained it all back and it was really interesting.
Anyway, so that’s a whole other thing. But speaking of, so we’re talking about the complexities and all these variables that go together. And that I’m curious for you working at the Autoimmune Association, that’s part of the role of nonprofit associations is to help promote patient advocacy, patient education. And so I’m just curious what led you to working there. And I’d love to just hear more what’s the latest and greatest stuff going on at the Autoimmune Association?
Laura Simpson (16:42):
Yeah. Well, I’m super excited to share. Autoimmune is something that’s always been near and dear to my heart. Like I said, even before my diagnoses it’s run in my family. And what’s interesting about autoimmune disease is that it pops up differently in different people. So my sister, she has celiac disease. I have cousins that have Hashimoto’s and thyroid issues. Mine one is dermatological and then there’s that inflammatory arthritis. So it’s something that is not often thought of as its own disease category, and that’s something that we at the Autoimmune Association want to make sure that we are putting front and center. So unfortunately, autoimmune disease is a growth industry. We are really where cancer was, I’d say 20 years ago. There’s certainly a need for increased awareness, advocacy, and really coordination, and that’s where the Autoimmune Association comes in. There’s a common theme that you’ll see kind of across our advocacy and awareness efforts, and it really centers around patient empowerment.
(17:58):
Patients really are the experts of their disease, and they’re central to everything that we do. So whether you’re seeking a diagnosis or have been recently diagnosed, or have been living with autoimmune disease for years and years, we’re here for you. We actually will be hosting next week our third annual Autoimmune Community Summit. It’s virtual, it’s free, and it brings together thousands of people across the globe that are connected through autoimmune disease. And we have really important sessions that were chosen by patients. We have sessions on pain and fatigue. Sessions around mental health.
(18:44):
Communicating effectively with your healthcare team, which for somebody like me who took so long to get a diagnosis is such a critical piece. Exploring complimentary medicine and caring for loved ones with an autoimmune disease. So if you have a loved one with an autoimmune disease, Dave Simpson, please come and join. We’d love to have you. I’m especially excited about our keynote speaker. He is a vitiligo patient advocate and a news personality. Lee Thomas, his TED Talk has over two and a half million views. We’re thrilled to have him speak to us about empathy, something I know we could all use more of in our lives. Again, it’s taking place October 5th and sixth, and we hope to see you there.
Cheryl Crow (19:35):
Yeah, and I was able to. I attended it last year. I’m sorry. Now I’m going to go against what I said earlier and say that even though my brain fog has gotten better, it’s not a hundred percent. Can’t remember if I spoke at it last year or was more just a… I did speak at it last year.
Laura Simpson (19:53):
You were a powerful moderator.
Cheryl Crow (19:56):
Moderator, thank you.
Laura Simpson (19:57):
I just remember it was before I had met you officially. And I just was like, “Who is this Cheryl Crow? I need to know her.” We were just blown away at your involvement and really the wisdom and nuggets that you shared with the community.
Cheryl Crow (20:11):
Oh, thank you. Well, that’s why I think virtual conferences really are unique. And I mean, if you had asked me 10 years ago whether I thought I could have just as deep of an experience in a virtual conference as an in-person, I would’ve been like, no. But now, especially with a lot of autoimmune patients being immunocompromised and whatnot, it’s really wonderful to have the virtual structure. It gives patient access. And then what I was going to say, the thing that I really love is connecting in real time. And this is just how my brain works because I know some people are like, “I can’t read the chat. I can’t read the comments while I’m listening to the speaker because it makes me not able to focus.”
(20:55):
For some reason, I’m able to focus on the speaker. But then I’m like, if the speaker says something that piques my interest, I’ll be like, “Oh yeah, that reminds me. There was a really good podcast episode of that on X’s podcast, and I’ll share that in the chat.” And then you can have little side conversations with people that relate to what the speaker’s talking about, or be like if they’re mentioning, “Oh, I use these compression gloves for my pain.” Someone might be like, “Hey, does anyone have a favorite brand?” And you can kind of connect to other patients in the chat.
Laura Simpson (21:24):
Yeah, it’s phenomenal to see and to be able to provide that experience. And if you register now, the community itself actually opens on September 28th and there will be opportunities to introduce yourself, share your cat pictures, and really meet people from across the globe. And like you said, kind of sharing that wisdom and lived experiences is just such a critical piece of it. A few years ago, we pulled our audience and we continue to do so to see if we should look back into an in-person summit or maybe some form of hybrid. And we had staggering results that people love the virtual summit.
(22:14):
If they want to lay in bed and watch a session, they can. Everything is also recorded so you can go back and watch it. And it also really gives us access to the true specialists and thought leaders. And we have a really incredible lineup, you included.
Cheryl Crow (22:34):
Oh yes, thanks.
Laura Simpson (22:34):
We’ll be on the pain and fatigue management session. I’m very much looking forward to that. But yeah, thank you. It’s something that we certainly strive to treat it like an in-person with that engagement with the sponsors and exhibitors and attendees. And so it’s great to hear from your perspective that that’s been successful.
Cheryl Crow (23:02):
Yeah. I think that it’s such an important service to provide these venues for patient education and connection. And every time I attend something like this summit, it’s like you see them in the chat, people will just say, “Wow, I don’t feel alone anymore.” I know on the fifth there’s a session on exploring complimentary medicine and diet with Dr. Simon Singla, who was actually on the Arthritis Life podcast earlier too. She’s awesome.
Laura Simpson (23:36):
Love her.
Cheryl Crow (23:36):
Yeah, I’m still not over the fact that she was a pediatric rheumatologist before she got her RA diagnosis. Like, what are the odds? And she’s going to help with demystifying medicine and diet. I think I would just say my observation through being really active in the patient communities over the last 10 years on social media and in person, is that the diet part is the most confusing. You can kind of break it down. It’s still how to get there is hard, but it’s like you need to get your heart pumping. You need to get however you need to do that, however you can do that, walking, running, biking, whatever works in your body. Get your heart pumping. And then you need to get muscles. Muscles, strength training, maintain your strength, increase your strength, and then stretching and then potentially balance. It’s like those are kind of the pillars that you can get at them multiple ways, but they’re the pillars. Whereas the diet to me still after these years, it seems like it can be the most confusing. And so having an expert there to help you is so helpful.
Laura Simpson (24:48):
Absolutely. Yeah, I agree. I know for me in my journey, it’s one of the more difficult things, especially because I know the triggers. But I don’t always follow them.
Cheryl Crow (24:59):
Yeah, behavioral psychology. Yeah.
Laura Simpson (25:02):
Exactly, exactly. And it’s a fine line because you don’t want to shame a patient for certainly where they are. We’re all human, but it is important to trust our bodies and kind of trial and error, learn those triggers and do the best we can. Again, I think moderation certainly if it’s not a celiac disease or something like that, I think moderation in all things is important. But yes, I very much look forward to that session.
Cheryl Crow (25:35):
Yeah. And I just in my Room to Thrive support group, last week someone said on a different topic, “Do you ever offer groups for care partners like spouses or friends? They’re like, “I’m sick and tired of explaining this to my partner. I want you to explain it to them.” And I’m like, “First of all, I get that actually. A lot of times people hear it differently when it comes from someone else, like an outsider versus their partner.” So I love that. On the 5th of October, or if you’re listening later, you can listen to the recording of the Supporting Care Partner session.
Laura Simpson (26:12):
Yeah. And one thing I’ll mention, so my husband, he was diagnosed with Celiac about a year and a half ago. And I jumped into action because I’m the Autoimmune Association. So I felt like I had all the answers, and quickly I learned the dynamic in a relationship where suddenly I was supporting him and needed to let him take the lead. And it was something that was a huge challenge to learn kind of firsthand. And there’s a lot to the communication, and that changes in the relationship. And so I certainly am excited that we’re able to bring that one this year. And we have some phenomenal experts that will be joining that session.
Cheryl Crow (27:00):
Yeah. And another one that I’m excited about, Dr. Kara Wada on communicating effectively with your healthcare team. She also wears multiple hats like Dr. Sing. Like she’s a doctor, but also has multiple chronic conditions, and she’s also been on the Arthritis Life podcast before. And then Juana Mata from Looms4Lupus, I got to meet her I believe at the ACR American College of Rheumatology conference last year. That’s going to be great because there are so many ways that communication can be challenging in these pressured 15 to 20 minute appointments, right?
Laura Simpson (27:36):
Yeah, exactly. Yeah, I’m thrilled. And yes, Juana, Kara, they’re phenomenal.
Cheryl Crow (27:43):
They’re wonderful.
Laura Simpson (27:44):
We’re excited about the lineup. You can check it out if you go to go.autoimmune.org/summit2023.
Cheryl Crow (27:55):
Okay.
Laura Simpson (27:56):
And register there, see the full agenda and get ready to join the community.
Cheryl Crow (28:03):
Yeah. I also have a link to it in my bio on Instagram, and I’ll put a link in the show notes too. This is just out of curiosity, I’m sorry I didn’t ask you this before. How long after the event will the recordings be up? Or is it kind of indefinite?
Laura Simpson (28:18):
Yeah. So last year we said about a week, and I think it was a couple of days. So I think this year it will be a couple of days. Let’s go.
Cheryl Crow (28:31):
Okay, so you got to act now.
Laura Simpson (28:33):
Exactly.
Cheryl Crow (28:34):
Yeah. No, that’s wonderful. And there’s also sessions on latest research and their future of autoimmune disease treatment, which I’m always learning more. Those of you who listened to a previous episode, I just had these researchers from Benaroya Research Institute in Seattle on. And they’re doing some phenomenal things about like, they actually blew my mind when they said they think there’s going to be a cure for rheumatoid arthritis in my lifetime. Because it’s one thing for someone to say that like a random person on social media. But for a PhD doctor researcher to say that, I was like, “Really? Wow, I didn’t even dare to hope for that.” So anyway.
Laura Simpson (29:11):
Yeah, they’re doing some phenomenal things. So yeah, we’re looking forward to that as well.
Cheryl Crow (29:16):
Yeah. I mean first of all, thank you so much for taking the time to share about this. And we’re kind of now at the rapid fire questions section of the podcast.
Laura Simpson (29:26):
All right, hit me.
Cheryl Crow (29:28):
Yes. So what are some of your best words of wisdom for people who are newly diagnosed?
Laura Simpson (29:35):
Connect with others. Don’t be afraid to share your story. Authenticity and vulnerability are really what connect us, and we need each other.
Cheryl Crow (29:46):
I love that. I love that. Yeah, it’s so common to feel alone. It’s like they say like, someone asks this Buddhist monk how often you should meditate, and they’re like, “30 minutes a day. Or if you’re really busy, it’s 90 minutes a day.” Kind of thing. It’s like when you least want to.
Laura Simpson (30:05):
Yeah, exactly.
Cheryl Crow (30:07):
When you least want to connect is when it’s most important to connect.
Laura Simpson (30:10):
Yes.
Cheryl Crow (30:11):
Yeah. And then do you have a favorite inflammatory arthritis like gadget or tool in your toolbox?
Laura Simpson (30:18):
I actually have two. The first one is physical therapy. For me, learning to stand, learning to sit and stretch and balance and really walk properly was life changing. Bionic shoes are another. That actually was my one and a half. And the second one for me, swimming became a really important part of my treatment. I feel so powerful and flexible in the pool and all the things. It’s a really good stress reliever as well.
Cheryl Crow (30:55):
I love it. I love being in the water too. I don’t like chlorine, but the chlorine has gotten better. I feel like chlorine technology has changed. It doesn’t irritate my skin as much as it used to. And do you have a favorite book or a show you’ve been watching?
Laura Simpson (31:12):
Ted Lasso.
Cheryl Crow (31:13):
Yes.
Laura Simpson (31:14):
I’m a believer. [inaudible 00:31:16]
Cheryl Crow (31:16):
Yeah, so great. And do you have a favorite mantra or inspirational saying?
Laura Simpson (31:25):
Back to swimming. I think Dory from Finding Nemo really said it best, just keeps swimming.
Cheryl Crow (31:32):
Oh my gosh. I say that to myself all the time. Or just also after Frozen 2. It’s like, just do the next best thing. Don’t think 20 steps ahead. Sometimes you just got to take one step ahead, yeah. What’s something that’s been bringing you joy recently?
Laura Simpson (31:49):
So family, friends, and really the amazing people that I get to work with. It’s interesting working in a nonprofit. Everybody that is connected wants to be there. So just being able to meet people like yourself, Cheryl, who are inspirational and really doing amazing work for the autoimmune community is what brings me joy.
Cheryl Crow (32:12):
That’s wonderful. And I think yeah, you’re in the right place. I mean because yeah, you’re in the right place if that’s what brings you joy. And I’m amazed at the work that the Autoimmune Association is doing. I was telling you before we started recording, but initially I connected to the nonprofits that are specific to arthritis. And after a while I was like, “Wait a minute, what’s this Autoimmune Association? This is interesting.” And like you said, there’s this issue where there wasn’t I think before them, Autoimmune Association, correct me if I’m wrong. But there wasn’t one centralized place that was for advocacy, research, education, empowerment for patients with across the spectrum of autoimmune disorders. Whether that’s something that causes a skin issue, whether that’s something that causes a stomach issue.
(33:06):
Long story short, if your a disease has the word arthritis in it, you might think, “Oh, the only opportunities for me to learn are going to be from organizations that are specific for arthritis.” But it’s like autoimmune actually, our association has a lot of these things. I guess I’m just saying what we already said, but reiterating it.
Laura Simpson (33:23):
And we work very closely with Arthritis Association and a lot of the other communities and run a coalition and certainly believe that a rising tide lifts all boats. We were founded in 1991, and like you mentioned, we really had a founder Virginia Ladd who started noticing autoimmune popping up within her family. She comes from a very large family and just sort of her desire to dig deeper is what brought about the Autoimmune Association. And it’s incredible in those 30 plus years how far we are and yet how much further we realized that we have to go. We were the American Autoimmune Related Diseases Association, AARDA prior to about a year and a half, two years ago when we rebranded to the Autoimmune Association. But same organization, just kind of a modernization of who we are now and where we’d like to go.
Cheryl Crow (34:27):
I had totally forgotten the old name, but I did come across it previously. I think the Autoimmune Association is just easier to remember. So that makes sense. And it does encompass diseases that aren’t a hundred percent known too. That’s the thing, that everything’s a gray area with autoimmune. But yeah, I think that’s great. And then back to my little list here, what does it mean to you to live a good life and thrive with an autoimmune disease?
Laura Simpson (34:59):
That’s a great question. I think for me, connection, empowerment, and community. Three things that you’ll find at the Autoimmune Summit. I didn’t even plan that it’ll be taking place October 6th and seventh. I really am a firm believer in the power of community and the difference that we can all make together lifting each other and sharing stories and just kind of being one.
Cheryl Crow (35:28):
I love that. I love that. I really appreciate the work that you’re doing and you taking the time to be here. Especially because I know from running my own educational summits that a week and a half before the event is a very busy time. So is there anything else you wanted to share with the audience before we wrap up?
Laura Simpson (35:51):
I don’t think so. Just thank you so much for having me. It’s been an honor and we hope to see all of you at the summit.
Cheryl Crow (35:59):
Awesome. Oh, and can you say, I always like to say it out loud in addition to putting it in the show notes, where can people follow the Autoimmune Association on Instagram and social media?
Laura Simpson (36:11):
Yeah, so you can go to autoimmune.org is probably the easiest place to start. At the bottom of the page, you’ll have a link to all of our socials. And then for the summit it’s go.autoimmune.org/summit2023.
Cheryl Crow (36:29):
That’s perfect. Okay. That’s so smart. I don’t know why I didn’t do that before. I’m always like, here’s this link. Here’s that link. Yeah, better to just say, “Here’s the website where you’ll find all of the links.” That’s super helpful. Well, I hope to see some people listening at the summit this year. But if the time doesn’t work for you this year, it’s an annual event, right?
Laura Simpson (36:50):
It is. And if you register, you’ll get access to those recordings again a couple of days after the summit and we’re very excited.
Cheryl Crow (36:59):
All right. Well thank you so much again for taking the time to record today, and we’ll talk to you soon at the conference, at the summit I mean. Okay, bye.
Laura Simpson (37:07):
Bye.
