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Podcast, Provider Interviews, Rheumer Has It

Rheumer Has It: Axial Spondyloarthritis Myths v. Facts with Dr. Jean Liew

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Summary:

Curious about axial spondyloarthritis and how it affects people beyond the typical stereotypes? Join us on our latest episode of ‘Rheumer Has It’ with Dr. Jean Liew as we bust myths and delve into the complexities of diagnosing this condition. 

Dr. Liew  shares her personal journey to becoming a rheumatologist inspired by a friend’s diagnosis. She then discusses the condition in detail, addressing common misconceptions such as it being exclusive to white men and always showing up on imaging. 

Listeners will gain invaluable insights into the challenges of diagnosing this condition, social determinants affecting diagnosis, and reliable resources for further information. This episode is a must-listen for anyone navigating the labyrinth of rheumatic diseases, providing hope and knowledge to help you thrive.

Episode at a glance:

  • 00:00 Introduction to Rheumer Has It Podcast
  • 00:26 Meet Dr. Jean Liew: Expert on Axial Spondyloarthritis
  • 00:40 Understanding Axial Spondyloarthritis
  • 01:41 Dr. Liew’s Journey into Rheumatology
  • 04:16 Busting Myths: Axial Spondyloarthritis and Demographics (it’s not just men!)
  • 06:50 Challenges in Diagnosing Axial Spondyloarthritis
  • 10:27 The Role of HLAB 27 in Axial Spondyloarthritis
  • 12:26 Imaging and Axial Spondyloarthritis
  • 14:38 Final Thoughts and Resources

Medical disclaimer: 

All content found on Arthritis Life public channels (including Rheumer Has It) 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:

Dr Jean Liew Bio

I’m a rheumatologist and clinical researcher in Boston, MA. My main areas of focus for research are spondyloarthritis and osteoarthritis. Outside of this, I enjoy food, baking, all of the arts, reading, and sometimes writing poetry. 

Eileen Davidson Bio

Eileen Davidson, also known as Chronic Eileen, is a disability and chronic illness advocate from Vancouver BC Canada. Living with a diagnosis of rheumatoid arthritis, she spends a large focus on volunteering and creating awareness around arthritis. With The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) Eileen is the Educational Media Assistant. Along with AiArthritis, Eileen is a member of the Arthritis Research Canada patient advisory board, and author with over 100 published articles.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty 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:

Full Episode Transcript:

[00:00:05] Eileen Davidson: Welcome to Rheumer Has It, the podcast that busts myths, highlights evidence, and inspires hope for living better with rheumatic disease.

[00:00:12] Cheryl Crow: Through plain language interviews with experts, we will offer actionable knowledge so you can thrive today. My name is Eileen. My name is Cheryl. Join us as we bust myths and spotlight evidence.

So today we’re so excited to have an expert here, Dr. Jean Liew, who’s going to be talking about axial spondyloarthritis. Which includes ankylosing spondylitis and non-radiographic axial spondyloarthritis. Can you walk us through what is this condition?

[00:00:42] Dr. Jean Liew: Yeah, so it is like a causing of rheumatoid arthritis.

It is where the body’s immune system is causing inflammation and we typically think about it as being in the spine. So there’s inflammation in the spine which is what the word spondyloarthritis means, and that is the more general term. And people may hear of different terms or different diagnoses that all fall under this.

So ankylosing spondylitis is an older term that is being less used now. That is one diagnosis and then we have more complicated diagnoses like non-radiographic or radiographic axial spondyloarthritis that we can talk a little bit more about. But they all refer to having inflammation affecting the spine.

But I would note that people can have inflammation in other parts of their bodies, including the joints, but also just other parts of bodies that are not joints.

[00:01:38] Cheryl Crow: Thank you so much. That’s really, really helpful. I’d also like to know next, can you let us know a little bit about your training and how you came to specialize in this research?

[00:01:48] Dr. Jean Liew: I think my training journey and how I got here has to do with the fact that before I started medical school. I had a, a close friend tell me that they were diagnosed with ankylosing spondylitis and they recommended that I look into becoming a rheumatologist. So this was approximately January, 2009.

I wrote it down on a piece of paper as I do if everything important to me. I did not know what a rheumatologist was. I did not know what anything was, but I was like, okay, I’ll consider this. And then I started medical school in 2010. And then like pretty soon I connected with a rheumatologist who was both a really like strong patient advocate who was just an excellent clinician who also enjoyed teaching.

So like that was just a, great connection in medical school. I went on to shadow him even after he moved cities. That really led me into really deciding I wanted to do rheumatology. So after completing medical school, which was four years I started a residency in internal medicine which you have to do before you become an independent clinician, like practicing on your own as a doctor.

And during that time I really solidified. My desire to go into rheumatology as an, an advanced field, which required more training after that. But as well as go into rheumatology research so that I can like really advance our understanding of why different things are so like. Who’s at higher risk for different outcomes or like, how the treatments really work after they’re studied in clinical trials.

So like multiple years of training later I’m here. I’m at Boston University and I’m seeing patients as a rheumatologist and I’m doing clinical research trying to get better answers that I can provide for the patients that I see.

[00:03:35] Cheryl Crow: That’s amazing. Thank you so much. We, you, we know you’re very busy, very prolific researcher in science communicator on Blue Sky.

So, I’ll go ahead and let Eileen start with the first myth that we’re gonna have you bust.

[00:03:49] Eileen Davidson: Yeah. So, i’ve been watching you for a while. I know that you’re an absolute rockstar with in the rheumatology field, so thank you for joining us today. It’s an absolute honor to get to interview you and also understand a little bit of your personal journey to becoming a rheumatologist.

I have a little personal journey myself to ankylosing spondyloarthritis arthritis because I might have it and I’m going through the whole seeing if I have another form of autoimmune arthritis. So, very interesting and one reason why I love this myth, only white men get axial spondyloarthritis. If I’m diagnosed, obviously that busts that, but what’s your evidence behind that?

[00:04:30] Dr. Jean Liew: So the reason a lot of the myths that we’re gonna talk about today have to do with how medical training happens. They say when you’re in medical school, you’re drinking from a fire hose of information and you’re supposed to learn all these intricate details about all these diseases, helps diagnose them how to treat them, and, you are never going to actually carry out all of that yourself, because when people are generalists, like general practitioners or primary care doctors they’re not going to be treating people with cancer. With chemotherapy, for example. They’re not going to be diagnosing people with different rheumatic conditions, most likely, but they’re supposed to recognize that person might have that condition and refer appropriately like to a rheumatologist.

So medicine has just gotten so specialized and there’s so much information that we now know. But the only way for medical school in four years to cover all of that information and get people to at least try to recognize when someone needs to see a rheumatologist for possible. Axial spondyloarthritis is to give them what we call buzzwords.

And they do that by asking lots of questions where it’s a scenario of you have this patient in clinic and they have these specific symptoms, and oftentimes it’s a very stereotype picture of what it would be. And the traditional description of ankylosing spondylitis is a young man, about 25 years old, say who has low back pain, and usually they are white, and usually they are HLAB 27 positive.

And they might throw in some other symptoms that they’re associated, like they might have a really red, painful eye with blurry vision that’s called uveitis. It can occur in some people with ankylosing spondylitis and so on and so forth. So, medical students are taught to recognize this pattern, but it misses a lot of people who definitely do have this condition.

[00:06:28] Cheryl Crow: That’s such a fascinating insight into what you’re learning as, as a medical student, as a resident when you’re just, like you said, drinking from that fire hose. So, I’m glad you were able to bust that myth that it’s definitely not only men and not only white men that get axial spondyloarthritis.

The second myth is that. It aio. Spondyloarthritis is easy to diagnose. Is that true or false? Why or why not?

[00:06:59] Dr. Jean Liew: Right. So if you match that like stereotypical case then it is easy to diagnose if someone is a young white man with black back pain that is better when they’re exercising worse when they’re trying to rest or sleep.

They’re HLAB 27 positive on this blood test. And when you do an x-ray and you look at their pelvis hip area. And you see that their SI or sacroiliac joints in the pelvis they have joined or fused together, which is what ankylos means, the bony fusion of bones. Then yes, that is an extremely easy diagnosis to make.

But that is a small subset of all the people who have axial spondyloarthritis. So again, it’s not even uncommon in a woman or someone who’s not white. It’s, it may be less frequent than in someone who is a white male, but it occurs in everybody. And, the, like the, the x-rays, which we’ll talk about later, I think in a different myth that just represents a subset of people who have this condition.

So in, in the people, in the people who have those features, easy to diagnose and everyone else very difficult.

[00:08:10] Cheryl Crow: Yeah. And just to tag along to with that, before we go to the next one, can you share a little bit about your research into like social determinants? And how that felt like how people in different social categories experience delays in diagnosis.

[00:08:27] Dr. Jean Liew: Right. So, tied with the fact that axial spondyloarthritis is overall not easy to diagnose this is a condition that has a really long delay to diagnosis. So the time from your symptoms starting until the day that the doctor gives you that diagnosis and talks to you about treatment, it can be many years.

Some studies say like eight years more than that. And that’s not improved despite having more medications to treat this condition more like imaging, like MRI, to try to diagnose this condition better. And that’s just an overall number. And our question was by different groups of race or ethnicity or social economic status, would there be even like.

Longer delays as compared to a population that might be white or white and male white and male and young. For reference. And we did do a study looking at just our, hospital. And we did find that factors like having documented social needs, like, housing instability or food insecurity that was associated with a longer time to diagnosis of axial spondyloarthritis in different race categories compared to white race had a longer time.

To diagnosis counting from the first time they had seen a doctor about some symptom, like back pain that was probably related to their diagnosis.

[00:09:54] Eileen Davidson: It’s very eyeopening and I having it taken a very long time just to get my rheumatoid arthritis diagnosis. I can only imagine how difficult it is for people who don’t fit the box for a diagnosis that has a myth, like only white men get axial spondyloarthritis around it.

Now there is another myth about Anglo axial spondyloarthritis that might make. Diagnosing it a little bit easier or maybe a little bit harder. A positive. HLAB 27 test means you have axial spondyloarthritis. Is this a fact or is this a myth?

[00:10:35] Dr. Jean Liew: So this is a really complicated one to explain. And HLAB 27 is a gene variant.

And it’s a gene that relates to a protein that’s involved in, in like cell function and immune system. Being positive for this gene variant, HLAB 27 is strongly associated with having ankylosing spondylitis, which is form of axial spondyloarthritis. But less than perhaps 50% of the overall genetic risk for ankylosing spondylitis is due to, to this HLA B 27.

And genetic risk is only part of the package. Because even if you have family members who have this condition, although you. Or higher risk for the condition compared to someone with no family members with this condition. You’re not gonna 100% automatically get it because your father had it, for example.

And there are lots of people who are carriers of this gene variant who will have a positive HLAB 27 blood tests. Who will not develop as ankylosing spondylitis. And it’s really only a minority of people who have that blood test positive. If you tested everybody who will develop ankylosing spondylitis, so by no means is it a test that equals having ankylosing spondylitis.

[00:11:56] Cheryl Crow: Thank you so much for explaining that. That’s definitely a myth that I’ve heard before and it really is, you know, my heart goes out to everyone listening who maybe is in that, what I call diagnostic purgatory, where you just don’t know what you have. You just know it’s something that is causing you pain.

And just know that, you know, it’s, it’s complicated for everyone. Right, the doctors too. And so empathy all around. Similarly, I think, I actually thought this myth for a while that axial spondyloarthritis always shows up on imaging. Like you can definitely see it. Is that a myth or is that a fact and why?

[00:12:31] Dr. Jean Liew: Yeah. So this gets complicated and I like that you said imaging but. For a long time it was just x-rays. You just had the x-rays to focus in on the a si or sacral iliac joints in the pelvis because that’s the classic sign that if the x-ray shows that those joints are few or ankles together.

That is diagnostic for ankylosing spondylitis. But X-rays only capture some of what’s going on. So the ankylos is a reflection of prior damage. The bone has already done this thing where it’s fused as joint together, so the joint is just. Joints are supposed to move, and when they’re fused together, that’s not good.

And this is something that can also happen along the rest of the spine as well, causing people to have what is called the bamboo spine, where every, every vertebra and the spine is fused together. But there is a lot of inflammation that happens that if it doesn’t cause this bone or joint change or damage, you wouldn’t see it on an x-ray.

So there are a lot of people who have lots of inflammation that you might see on an MRI of the same place of the sacroiliac joints, SI joints who will have completely normal x-rays of the same place. So it was a huge like. Revolution of imaging to have MRIs and to identify which MRIs were actually indicative of, or like just more consistent with this diagnosis because people were getting normal x-rays and say, being told they didn’t have this condition at all.

And now we know that non-radiographic axial spondyloarthritis which really means, they have a positive MRI showing inflammation and or damage to the bones and joints, but have a normal x-ray. Now we know that this is a whole subset of people that we were missing with just x-rays alone.

[00:14:24] Cheryl Crow: Thank you so much.

And that that’s a great example of how science, you know, changes over time and hopefully we keep getting better and better diagnostic measures. Oh, I’ll hand it over to Eileen now.

[00:14:36] Eileen Davidson: Yeah. And. First, you have taught us so much already in such a short amount of time and an excellent plain language. May I add now our last wrap up question a little bit of a conclusion.

In one sentence, what is the most important takeaway you’d like someone to learn from this episode?

[00:14:57] Dr. Jean Liew: I think the most important takeaway would be if you are concerned about having axial spondyloarthritis that it is not a bad idea to look on the internet for trusted resources to better understand what you should be looking for.

[00:15:19] Cheryl Crow: Well, that dovetails perfectly into my question, which is where if people want to either connect with you or learn more about axial spondyloarthritis, I guess those are two different questions. Where do you recommend they go?

[00:15:34] Dr. Jean Liew: Well, this is a very US-centric recommendation, but the patient organization for spondyloarthritis in the US is called the Spondylitis Association of America, SAA.

They have a lot of information as well as just like handout information, videos they have like webinars and global summits with videos from experts like me and my colleagues that they have posted on their website. And they also have just information about how people can, like, have local meetups with people who are living close to them so they can have like peer support in person as well as online.

I know that the UK has its own version. I know Canada has its own version. Different countries have their own versions of this. But you want to be looking for a patient organization. We around that disease condition, and that is where you would find relevant information. You are not, you are not looking for like Google’s ai, like, generated information about what’s the condition.

Don’t look at that. Go look for patient organization, that’s for patients and, and has connections with experts.

[00:16:45] Eileen Davidson: Absolutely agree now. Thank you so much for joining us today and walking us through the difficult to understand process of diagnosing axial spondyloarthritis. And thank you to our listeners for joining us today.

Stay tuned as we uncover more myths, stigmas, and misconceptions about rheumatic diseases. Thanks

[00:17:06] Cheryl Crow: so much. Bye-bye

[00:17:07] Eileen Davidson: for now. Thank you.

[00:17:09] Cheryl Crow: Thanks again,

[00:17:09] Eileen Davidson: Dr. Liew. Bye.

 

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