Ankylosing Spondylitis with Sean Ewert and Manny Caro, Spondylitis Association of America

Speaker Key:

VO      Voice Over

CB       Chantal Boyle

LS        Lynn Smith

SE        Sean Ewert

MC      Manny Caro

00:00:00

UF       

Welcome to the Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with hidden disabilities.

CB       

Welcome to the Sunflower Conversations. My name is Chantal, and I'm one of the hosts. And I’m also joined by Lynn Smith, who is the Regional Director for the Hidden Disability Sunflower in the USA. Hi, Lynn. How are you?

LS        

I'm doing very well, Chantal. Thank you. I'm very excited to meet our guests today and hear what they have to say.

CB       

So, we are welcoming Sean Ewert and Manny Caro from the Spondylitis Association of America, who are going to provide an overview of spondyloarthritis, which is an umbrella term that encompasses several chronic inflammatory diseases. So, welcome to both of you.

00:01:14

SE        

Thank you. Hi, Chantal. Hi, Lynn. Thanks so much for giving us the opportunity to share a bit about spondyloarthritis with the Hidden Disabilities family. My name is Sean Ewert, and I'm the Director of Member Engagement at the Spondylitis Association of America. SAA has been serving the spondyloarthritis community since 1983, funding medical research, publishing educational materials, and producing programmes to help all those affected live their lives to the fullest.

MC      

And I’m Manny Caro. I'm the Senior Manager of Member Engagement, and I also oversee SAA’s Educational Support Group Programme. Although SAA is a US non-profit with groups around the country, they are primarily virtual and can be accessed from anywhere in the world. Because hidden disabilities can be isolating, SAA firmly believes that access to a support network is critical to ensuring that no one has to face the challenge alone.

CB       

Thank you for the introduction. I think for our audience, who will be listening to this audio-only, as it's a podcast, I'd like to give a visual description of what we look like. So, I am female. I have brown skin. I have long, brown, curly hair, which is shaved on one side, and I am wearing clear-framed glasses. So, Manny, would you like to go next?

00:02:33

MC      

Sure. I am Manny. I am male. I have long, black hair. Currently, it is tied up in a bun. I have brown skin, and that's about it.

CB       

Thank you. Sean?

SE

I am male, and I am Caucasian. I'm bald. I wish I had hair, but I've been bald for so long. I'm bald. And actually on driver's licences now, here in America, you can actually select bald, which you used to not be able to do. 

CB       

Okay. 

SE        

And I also have glasses on.

CB       

Thank you. And Lynn?

LS        

Yes. I'm Lynn. I'm a white female. I have bangs and long brown hair and a black shirt.

CB       

And for our UK audience, bangs is a fringe.

LS        

Yes, thanks. 

CB       

As we’re international. So let's get into it, please. Can you start off by explaining, and also let me just make sure I'm saying this correctly, spondyloarthritis? Is that correct, Sean?

00:03:34

SE        

Yes, that’s it. 

CB       

And the illnesses which sit underneath that.

SE        

That was well spoken, by the way. 

CB       

Thanks.

SE        

Spondyloarthritis is not easy to say. Spondyloarthritis, or SpA, refers to a family of closely related diseases that share common features, chief among them being inflammatory arthritis in the spine and other joints. Spondyloarthritis often begins in young people, with symptoms usually starting before age 45, often much younger, in their teens and 20s. 

The primary disease in this group is ankylosing spondylitis, or AS, also known as axial spondyloarthritis. This terminology is so clunky, and it's probably one of the reasons, despite SAA’s best efforts, that this disease remains underknown. It's hard to spread awareness of something that most people can't even pronounce.

MC      

Other diseases under the SpA umbrella include psoriatic arthritis, spondylitis associated with inflammatory bowel disease, reactive arthritis, and juvenile arthritis. All somewhat different, but with an underlying similarity.

CB       

I've got to be honest, that what you said there is probably true in terms of the name, because I've seen ankylosing spondylitis, but I was really unsure of how to say it, and I didn't realise it was an inflammatory disease. It's part of the arthritic family, would you say? Would you explain it like that or not?

00:05:05

SE        

Yes, absolutely. We've been told, at least when I was hired, Manny, you probably had the same thing, that it's a subset of the larger arthritis umbrella. And spondyloarthritis and SAA have been working on awareness for this disease for such a long time, and they don't receive government funding, so we've always been hanging out in the niche area of arthritis awareness groups. 

It's always, and Manny's probably smiling, it's always, when we explain this to people, we've got our elevator speech, but we're not a major just Arthritis Foundation. We are very specific, with this very specific type of disease.

CB       

Thank you. So, what is the prevalence in the US and globally? Do you know?

SE        

It's funny you ask me that. So, SpA is more common than people realise. In the US, about 1% to 1.4% of the population is affected, and that's over 3 million people. Globally, the numbers range from 0.5% to 2%, depending on the region.

MC      

It's often referred to as a rare disease, but in fact, it's more common than rheumatoid arthritis, multiple sclerosis, and ALS combined. All forms of the disease are underdiagnosed, so the real numbers may be even higher.

CB       

Yes, that is a surprise because, as I mentioned, rheumatoid arthritis I've heard of. I think everybody has heard of that, and multiple sclerosis. And it's surprising that there isn't any funding for it. And do you think that's down to the fact that it is underdiagnosed?

00:06:40

SE        

That's a good question. I personally can't speak to why funding is tough for it. I would probably say that there's other versions of arthritis that are able to, I don't know, take larger pieces of the pie. I don't have any numbers to back that up. 

But it also takes, and Manny, you know this, too, it takes a long time to diagnose this. It can take seven to ten years, and it's harder for women than for men to be diagnosed. So, I think there's such a lag in this. And it was considered a man's disease for so long, which I think we mention a little later, too. That may affect funding as well. Manny, any thoughts on that, or…?

MC      

I can totally see that, I think especially prevalent with the fact that it's considered a man's disease. Unfortunately, even in today's era of medicine, a lot of rheumatologists still think that women cannot get this disease. And because they think it only affects one gender, a lot of research doesn't really go into it, and so a lot of people just brush it to the side. I think once they realise that more people and men and women and people of all ages get this disease, more is looked into it. Medical schools will make it more of a prerogative to explore it and research it.

CB       

Yes, it sounds like it. So, what are the symptoms of AS? And just to let everybody know, we're going to call it AS. We're going to call ankylosing spondylitis AS, because I don't know if I can keep up the momentum of saying it correctly throughout the duration of the recording. What do you think, Lynn?

00:08:23

LS        

I don't know. I'm glad you're saying it and I'm not. So, AS works for me. Yes, so what are the symptoms of AS?

SE        

The primary disease in the spectrum, ankylosing spondylitis, or AS or axial spondyloarthritis, causes lower back pain and stiffness, especially in the morning or after periods of inactivity. And as the disease progresses, it can lead to reduced flexibility, fatigue, and in severe cases, a fusion of the spinal vertebrae, which can cause the spine to fuse into one solid bone, limiting mobility. And these symptoms can significantly impact daily activities, work, and social interactions.

MC      

It's an invisible condition. You can look fine on the outside, but inside, it's like your body is constantly fighting itself. People with AS may have trouble sitting, standing, or walking for long periods of time. They might miss work, struggle with sleep, or feel isolated socially. And it's not just physical. It takes a mental and emotional toll, too.

CB       

You said that we were going to come onto it a bit later, but I just was wondering. You were saying about that. Do you think that women are not being diagnosed with it as much because of the initial lower back pain? That that is something that might be associated with women's issues, or not?

SE        

It's a really good question, Chantal. I don't know why. This disease is old. They found mummies in Egypt that have this disease. They were able to tell from the spine and all that. So, this disease has been around a super long time. 

00:09:58

I don't know if culturally it just went there, or men present differently than men… Or sorry, men present differently than women, which I think they do with this disease. 

Plus, there's so many different ways you can be diagnosed. This disease is absolutely different for everybody. And when we give information out from SAA on the phone or in email, we always say, we don't have medical staff in the office. And some folks have very specific questions, and we always turn them back to their medical professional.

MC      

It goes to show you how difficult it is to diagnose this disease. When men are calling in, sending us emails, or just inquiring about different things, they tell us, hey, I can't get a diagnosis from any doctor. I've been having this pain since I was a kid, and they just attribute it to growing pains or just pains from being an athlete all my life. They just told me, hey, you're going a little bit too hard with sports. 

And when they dismiss those people, especially when it’s men, I can only imagine what they do to women who come in with the same symptoms, and they probably attribute it to something else. And I think as just Sean said, just to piggyback off that, it could be just the culture around medicine and how they treat women.

CB       

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LS        

You said it takes seven to ten years to get a proper diagnosis. Are there tests or anything? How do they do that? And why does it take so long?

00:11:31

MC      

Yes, HLA-B27 is a gene that's prevalent in people who have the disease. However, you can test negative for it and still have the disease. It's really just more as a, think of it as a clue that doctors can use to steer their diagnosis in the correct direction. 

So, you can have this disease and not be HLA-B27 positive, which is a big misconception. A lot of folks think that because they have the gene, that they automatically have the disease, which is not true.

CB       

And can symptoms improve?

SE        

Yes, of course they can, with the right treatment plan. In the last 15 years, many different types of medications have been developed that have vastly improved outcomes for many people. But they're not a cure, and they don't always work for everyone. Like many diseases, this one has flares, so symptoms can come and go, and exercise is the only treatment that helps everyone, regardless of where they are, in the disease progression. And that includes yoga. We push yoga a lot.

MC      

Early diagnosis also makes a big difference, but because the disease can present differently in different people, many people wait years to get properly diagnosed. For instance, the disease often presents differently in women, and many physicians still mistakenly believe that AS is a man's disease. In fact, just as many women get AS. But if it may begin in peripheral joints, rather than the lower spine, early diagnosis and disease management will always lead to better outcomes.

00:13:00

CB       

And you mentioned before, that the symptoms really are non-visible. And those patients where their spine has completely fused, that is quite extreme, but obviously a significant impact on somebody's life. So, what are some of the barriers and challenges that people face in terms of daily activities and other people's perceptions?

SE        

AS is a hidden disability, absolutely. People often don't believe you're sick because they can't see the pain of the fatigue, and that leads to judgement or disbelief at work, in social settings, or even from doctors.

MC      

Even day-to-day simple things like getting out of bed, tying shoes, or sitting in a meeting can be painful. And when people don't understand what you're dealing with, it adds another layer of stress. That's why awareness is important.

SE        

That reminds me of the Spoon Theory, if you've heard of that. I'm sure many of your listeners are familiar with it. In 2003, there was a writer named Christine Miserandino, coined the term Spoon Theory while explaining to a friend that what a chronic illness is like. And she grabbed a handful of spoons to make her point. 

And she says, I start each day with 12 spoons, but depending on how I feel, the spoons are used differently. So, on a high-pain day, a relatively simple task of showering or getting ready for the day can take four spoons. But if it's a low-pain day, that same task might just take one spoon. So, she says she has to balance what I need to do every day, with how much energy I have. And when the spoons are all used up, there's no replenishing them.

00:14:36

MC      

I've had many phone calls with SpA patients who refer to Spoon Theory. It's a simple metaphor that resonates with people who attempt to explain chronic pain and fatigue to friends and family that don't live with it on a daily basis. To me, it's a perfect reflection of a hidden disability, and people struggle to explain it to others.

CB       

We're familiar with the Spoon Theory, aren't we, Lynn?

LS        

Yes, we are very familiar with the Spoon Theory. We hear it a lot, because there are so many different non-visible disabilities that do actually present like that, and the Spoon Theory is very applicable to a lot of them.

CB       

And how we communicate with the Sunflower Community and the wider society is through our social media. And when we have done some informative social media posts about Spoon Theory, it's been so interesting to read people's responses, because some, not everybody has heard of it, and they have responded that this is amazing, I'm going to use this to explain to my friends and my family, as you've just mentioned, about how I'm feeling. Because it's so difficult for others to understand that chronic pain and chronic fatigue and the impact that that can have.

And sometimes we'll hear people say, sometimes I don't need to. I can go to a music concert, but then for a week, I can't move. Or I went shopping, but then after that, I've had to use a wheelchair for a few days. 

00:16:09

And the judgement and the assumptions by other people are negative and they're cruel, and it's hurtful. And so, utilising the Spoon Theory to explain what that individual is going through is quite useful. 

Why has the Spondylitis Association of America joined Hidden Disabilities Sunflower? And what scenarios do you see the Sunflower being a supportive tool?

SE        

Over the years, we’ve featured many articles in our newsletters with tips and tricks for travelling, or just navigating the day-to-day world when experiencing a flare or having a bad day. When we learned of Hidden Disabilities and the Sunflower Programme, we saw immediately that this could be something that would be of help to our community.

MC      

For instance, at an airport, someone with AS might just need a little bit of help lifting their suitcase on the scale, or assistance getting to the gate, maybe a little more time navigating security, or the ability to board early. People aren't always comfortable asking for help. The Sunflower lanyard means that help and patience will be offered when it's needed the most.

CB       

That's so true. I think we get such positive feedback, especially in the US, where we have how many airports now, Lynn, which are…?

LS        

Yes, we have about a hundred airports there, because we have from small regional airports, all the way up to very large airports. Chicago, Atlanta, Boston. We currently have LAX training, and they'll be coming out. We have a lot of good, larger airports now, so pretty much anywhere you go, you can get there via an airport with the Sunflower.

00:17:49

CB       

Are the airports there, Lynn, offering lanyards to the passengers, or does it really on an airport-by-airport basis?

LS        

Most of the airports do have lanyards that they're offering to. I think pretty much all of them do. Some of them even have the pin badges.

CB       

Okay.

LS        

And the warmer climate ones, in Florida, some give out the wristbands. Yes, so it's really well. And then really exciting, this year, we have United Airlines, the first US carrier. So, now if you fly United, they recognise the symbol. And I've gotten so many nice letters, and kudos to them. And people have had wonderful experiences flying United now, so that's been wonderful.

CB       

That's what we see, is that the Sunflower really does remove those barriers and gives access to travel, which is what, Manny and Sean, you've just explained, why you see the importance of it and the usefulness of it as a tool. What does the Spondylitis Association of America do? And how can people listening get in touch?

SE        

SAA prides itself on meeting our community wherever they are, and providing whatever we can to meet their needs. Our four pillars are research, education, advocacy, and support.

00:19:16

MC      

We are also very committed to responding to each and every inquiry that comes in, personally and quickly. If there's anything we can do to help with, we'll put out all the stops to do so. Anyone with questions can reach out anytime at info@spondylitis.org, and we'll get back to you right away. Everything we do revolves around the people we serve.

CB       

That's amazing. What we'll do is, in the show notes, we'll include that email address and your website and links to any resources, so that people can contact you to get support. 

And I guess, Lynn, all we need to do is thank Sean and Manny for their time today, and for helping to raise awareness of these conditions and the fact that they are non-visible. And to actually stop and take a breath, or as you say in the US, I think, stop and take a beat?

LS        

Yes, that was very good. 

CB       

Thanks.

LS        

But, yes. And thank you, guys, very much for being Sunflower supporters and helping spread awareness of the Sunflower Programme as well.

SE        

Awesome.

MC      

Yes, thank you for having us.

00:20:32

CB       

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your health care practitioner. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the Hidden Disability Sunflower. You can also follow and subscribe to the Sunflower Conversations Podcast.

VO      

If you'd like to share your Sunflower story or conversation, please email conversations@hiddendisabilitiesstore.com. 

Find out more about us, or listen to this recording again, by checking out our insights page at hiddendisabilitiesstore.com. You can also find us on Facebook, Instagram, Twitter, YouTube, and LinkedIn.  Please help, have patience, and show kindness to others, and join us again soon. Making the invisible visible with the Hidden Disabilities Sunflower.

00:21:42