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Join us for a conversation with Kara Wada, an adult and pediatric allergy, immunology, and lifestyle medicine physician, as she shares her personal journey with Sjogren’s. Discover how her experience as both doctor and patient has shaped her perspective on patient care, the challenges of diagnosing non-specific symptoms, and the systemic implications of Sjogren’s. Kara discusses the importance of empathy in medical training, the impact of health care disparities, and the urgent need to break outdated stereotypes about invisible illnesses.

Kara Wada is an adult and pediatric allergy, immunology, and lifestyle medicine physician.

She discusses the KevinMD article, “From doctor to patient: my Sjogren’s journey and a challenge to colleagues.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome back Kara Wada. She’s an adult and pediatric allergy, immunology, and lifestyle medicine physician. Today’s KevinMD article is “From doctor to patient: my Sjogren’s journey and a challenge to colleagues.” Kara, welcome back to the show.

Kara Wada: Thanks so much for having me again, Kevin.

Kevin Pho: So Kara’s been on multiple times. Go to KevinMD.com/podcast to search for her name, hear her story. And let’s go to your most recent KevinMD article, “From doctor to patient: my Sjogren’s journey and a challenge to colleagues.” Tell us what this article is about.

Kara Wada: Yeah, so what I’ve realized on about the five-year anniversary of my diagnosis with Sjogren’s is that truly what we learn through our medical training is not representative of the lived experiences that those of us who live with Sjogren’s disease actually have. And so it’s my mission to take this pain and frustration I’ve had with this diagnosis and really turn it into a purpose of sharing what the reality of living with Sjogren’s disease is, in the hope that that helps improve our ability to recognize it when we see it, diagnose it accurately, and treat it as well.

Kevin Pho: Now, to get all my listeners up to the same page, talk a little bit about what Sjogren’s is, and then that could lead into some of your lived experience with the disease.

Kara Wada: Yeah, so Sjogren’s disease, formerly known as Sjogren’s syndrome, is an autoimmune condition. It affects, we think, approximately one in 100 individuals, which is actually pretty common, more common than things like lupus, which we know very well. 90 percent of those patients are female, and about 30 to 40 percent of folks have normal blood work and they still have Sjogren’s, which was a real surprise to me.

So this autoimmune condition affects primarily our moisture producing glands in our body, but also affects those small fiber nerves as well, and that can create and wreak some havoc on our autonomic, or automatic, nervous system. So it’s actually a common cause of POTS, or postural orthostatic tachycardia syndrome, and other forms of dysautonomia, which we’ve talked a little bit more about in the last few years with its association with long COVID.

Kevin Pho: So talk about the time that you were first diagnosed with Sjogren’s. What were you feeling, and what led you to these tests that diagnosed the condition?

Kara Wada: Yeah, so I was a few months back from my second maternity leave, after having my now nearly six-year-old daughter, and I went for my dental checkup. And at that checkup the dental hygienist said to me, hey, your mouth tissues look dry. And it was that seemingly benign comment that really had all these little puzzle pieces kind of snap together in my mind.

I had dealt with dry eye consistently since even maybe before my first pregnancy, a few years prior to that. Wasn’t able to wear mascara without looking like a raccoon, wasn’t able to wear contacts any longer. And I also had this really frustrating back stiffness and pain that always got better when I was pregnant, and I knew that that was odd, because all my girlfriends were really complaining about their backs during pregnancy, but I actually felt pretty great. And I had this fatigue that really felt like gravity had been turned up a few notches and just was unrelenting.

And it was that comment then that said, oh goodness, I’m worried about what’s going on, I need to make that appointment with my primary care doc and get checked out.

Kevin Pho: And what is the diagnosis process like?

Kara Wada: Yeah, so I was extraordinarily fortunate. I’m an immunologist by training, so I knew which labs to even ask for, and my labs were pretty blatantly abnormal, which is not necessarily the case, as I mentioned, in 30 to 40 percent of patients with Sjogren’s. And so for me that diagnostic process was frankly pretty easy.

What I think is interesting, though, is looking back and knowing what I know now about Sjogren’s, primarily from fellow patients in the community, is I’ve had some symptoms that would at least hint towards that diagnosis probably dating back to when I was in college.

Kevin Pho: So what’s it like to live with Sjogren’s, both at home and during a profession as a physician?

Kara Wada: So after my initial diagnosis and a pretty significant flare kind of later that summer, I actually decreased my time in clinic to about half-time for a while, so that I could really focus on trying to get myself healthy, really leaning into using lifestyle medicine. Because frankly, even now we don’t have really great treatments for Sjogren’s quite yet. There are a few clinical trials that are in phase three trials right now, which are very promising.

But I took a step back and I kind of re-evaluated my priorities, worked on aligning what I was doing in life with what my goals were. And that’s been a several year-long process. Although I’ve gradually gone back up to about three-quarters, still full-time, and have subsequently had another kiddo.

And what I’ve realized for me is that I really have to dial in on my self-care. For me, I know sleep is a non-negotiable. If I don’t get good sleep, my batteries don’t recharge. My battery is a bit like an old iPhone from time to time, it takes a little longer to recharge, may drain a little bit quicker.

I realized that last week, I took my three kiddos to the Air Force Museum, which is really cool, I’m located in central Ohio, so it’s a really cool museum relatively nearby, but it’s huge. It’s like 20 acres of indoor exhibitions. And so we took it slow, we paced ourselves, we only stayed for about two hours. And I knew that day after, I was going to need some extra time and TLC to really kind of recharge for the upcoming week.

Kevin Pho: So what are some of the chronic symptoms that you have to deal with on an ongoing basis and manage?

Kara Wada: So dry mouth and dry eyes. So I always have my water bottle handy. I joke that it’s like Linus and his blanket, stuck to a water bottle. I also make sure to keep eye drops, like rewetting eye drops, in my purse or backpack at all times, diaper bag, they’re kind of scattered everywhere.

And then really those are the big things. I make sure to take my medications as prescribed every day, try to do my best to get in for my checkups, though I am kind of that typical doctor patient where I’m not always the best, and definitely human in that regard.

Kevin Pho: You mentioned earlier that during medical training we don’t get a lot of the lived experience from patients with Sjogren’s. So what are some of the key points that you want other clinicians who may be listening to you now to know about Sjogren’s?

Kara Wada: Yeah, so certainly dry eyes and dry mouth are a part of the disease, but that is not what your patients are going to have as their chief complaint. They are going to talk a lot more about body pain that’s going to sound and look very similar to fibromyalgia. They’re going to talk about the fatigue, like gravity has turned up a few notches, or they’re just tired from the time they wake up till the time they go to bed.

They’re going to talk about perhaps some of those autonomic nervous system issues, so difficulty with gastric motility, trouble swallowing, trouble with constipation or other IBS-type symptoms, and sometimes balance issues.

So one of the symptoms that I more recently recognized tied to my Sjogren’s is, I’ve always been more orthostatic or vagal, so I have a tendency to get more dizzy if my tank isn’t full. So I’m always working on hydration, have a salty snack nearby if I’m standing for too long, if it’s too hot outside, I’m more heat intolerant. And those and other symptoms similar to POTS are pretty frequent with Sjogren’s as well.

Kevin Pho: So you are also involved with the Sjogren’s community as well. So what are some of the discussions there in terms of their opinion of what the medical profession may be lacking in terms of the insight into Sjogren’s?

Kara Wada: I think there’s a lot of frustration. There is a lot of discussion about feeling like they’ve been gaslit in a visit, where things like their fatigue and pain maybe aren’t taken seriously. And there’s also a fair number of those within the rheumatology community that see Sjogren’s as a more nuisance type disease.

I think this is in large part due to the fact that we haven’t had real great and effective treatments to offer to patients, and I’m hoping that we see that tide change with these new medications that are so close to approval, just not quite there yet, that that really will open their eyes to have a new perspective on the fact that this disease does impact our quality of life considerably, and that we deserve care and treatment just like our fellow patients who have lupus, rheumatoid arthritis, and other similar and serious autoimmune diseases.

Kevin Pho: So to be clear, as of today there aren’t any medications that target Sjogren’s. Can we use any of the other medications that target the other rheumatologic conditions?

Kara Wada: Yeah, occasionally medications will be used off label. So for instance, I’ve been on hydroxychloroquine, or Plaquenil, for some time, and knock on wood, that has seemed to keep my disease fairly well in check. That’s not the case for everyone, not everyone tolerates that medication, so sometimes other things like methotrexate are also tried, and in severe cases rituximab, which works on decreasing kind of those B cells and antibody production. But those are all used off label.

So there are several drugs that are currently in phase three clinical trials, knock on wood, I’m going through the screening process for one of those trials right now. And the data from those phase two trials looks promising. So I think there is an undercurrent of some hope for the first time that I’ve seen through the Sjogren’s community as well.

Kevin Pho: You said earlier that some rheumatologists see Sjogren’s as a nuisance disease. So where are you getting that feedback from?

Kara Wada: From patients, and to be frank, sometimes some of my colleagues that I’m referring patients, I’m concerned about Sjogren’s in them, I refer them for their opinion and their help. As an allergist-immunologist, I have some training but certainly don’t have quite as much training in taking care of those with these conditions. And that’s frustrating.

I think, as we know, medical education, it takes a long time to see a shift in the tide. In my own field, in allergy, we have seen that. A great example is the flu shot and its association with egg allergy. We’ve known that that’s quote unquote not a thing for close to 20 years now, but every once in a while you still get that doc, or someone who gets sent in because of that concern. And certainly we’re more than happy to help and take care and educate.

But those myths really take on a life of their own, and this is one way of speaking out here, writing on your blog and website, and just getting the word out, that we need to continue to let people know that what we learned in those first experiences and introductions to a particular condition is not how things always stay. We continue to learn, we continue to evolve, and this is one area that really needs that push, so we can let go of some of those myths that just keep persisting.

Kevin Pho: So in your ideal world, what would you like to see more and more clinicians do and be more sensitive to, with the potential diagnosis of Sjogren’s?

Kara Wada: I just want them to think of it, to have it come up on their differential diagnosis, to consider sending labs, but also realizing that labs are not the be-all and end-all when it comes to diagnosis. The diagnosis of Sjogren’s disease is a clinical diagnosis. It is supported by some of these lab findings, but that’s not the be-all and end-all.

And I think the other thing to just remember is to keep an open mind and to listen to your patients’ lived experiences, and don’t argue with those lived experiences. Just try to help the best you can with the tools you have. And listening is one of the most important tools we have as clinicians.

Kevin Pho: Well, that leads to my next question. How has your lived experience of Sjogren’s affected your own interactions with the patients that you see?

Kara Wada: So with my advocacy and talking out, I’m certainly seeing a lot more patients who are self-referring with concerns for it, and trying to help them through the diagnostic process.

I also have been really pretty steadfast, and frankly stubborn, about the length of my appointment time with patients. I think time and listening is just absolutely critical in our role as clinicians, but especially personally as a tertiary care specialist. I need that time to be able to hear the story, let them be able to share those lived experiences, and build that therapeutic trust with patients as we’re going to work forward to figure out what’s going on and to help them reach their goals, along with my goals for them as well.

And I think it’s really pushed me to continue to think about, especially, immune system health in different ways. In particular, seeking out training in lifestyle medicine, and more recently signing up to learn more about functional medicine. All building this toolbox that is going to help me better understand what’s going on, what’s going wrong, and how we might be able to help things get in that healing trajectory.

Kevin Pho: We’re talking to Kara Wada. She is an adult and pediatric allergy, immunology, and lifestyle medicine physician. Today’s KevinMD article is “From doctor to patient: my Sjogren’s journey and a challenge to colleagues.” Kara, we’ll end with some of your take-home messages to the KevinMD audience.

Kara Wada: Yeah, I think keep an open mind, listen, and continue to learn. There are great free resources out there. We host the virtual Sjogren’s Summit every year, which is a free event where people can come and learn from our community and leaders within the community. And just at least have Sjogren’s on your differential, and it doesn’t always mean just dry eyes and dry mouth.

Kevin Pho: Thanks, Kara. Thanks again for sharing your story, time, and perspective, and thanks again for coming back on the show.