Episode 38 – What’s life like with two types of IA?

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: And Katy. And this week we’re also joined by James Hollens, so thank you for coming on James.

James Hollens: Thank you for having me girls I like your podcast, I love it a lot, so I’m honoured that you’d have me on as well. Thank you.

Katy: So, James, it’d be great today if you can tell us your story essentially about your two diagnoses and I guess how it all started.

James Hollens: So, I have two confirmed autoimmune conditions. I have rheumatoid arthritis and ankylosing spondylitis. It all started when I was at just finished university. I was planning to move to China. So, I was in the process of trying to get a visa, basically. And I was going to be teaching. So, I was doing my teaching qualifications. So, whilst that was getting put together, I started working in a bar and just like making a bit of money and filling the time whilst I was waiting for it. And then I remember one time one of my friends called me and asked me if I wanted to go out for a few drinks. And of course, I’m 21. said, yes, I’m not working until the afternoon. Let’s do it. And obviously I’ve had a few. The next day I’ve gone into work and I’m like wobbling all over the place. And I’m thinking, oh yeah, must have overdone it on the dance floor last night, must have fallen down a night bus or something. You know how it goes. So, I’m like, hey, I’m thinking it’s self-inflicted. Everyone’s sort of laughing at me, calling me hop along and that. And I’m like, fair enough. Yeah, I’ve probably done myself in right now. So, a few weeks have passed and I’m still wobbling all over the place. I’m still limping. In fact, it’s getting worse.

So, I’m thinking I must have done myself some real damage here. And it’s got to the point like a few, maybe three weeks after I’ve woken up for a morning shift and I’m in absolute, screaming in agony. I’m stuck in my beds. I didn’t realise until my dad basically found me and lifted me to a hospital that all of my joints had like ballooned up like from the waist down. My knees are all out here popping out. Toes, ankle, everything’s all red and swollen and a mess. But I was in too much pain to not really even notice that at the time. I’ve just got to the hospital at A &E and they’ve seen me and they’ve said, oh, maybe it’s cellulitis because it was like warm and red and the bulging. So, they’ve given me a bunch of antibiotics, sent me home, taking that for a week or so and it’s just still getting worse and worse. So, I ended up going back to the hospital and this time they’re telling me, it’s a blood clot maybe. So, we’re gonna have to do some blood thinning injections. So, they’ve done all that. Again, a week or so passes, it’s even worse. So, I’m going back now they’re telling me it’s a cyst that’s maybe popped. Like I just kept on being in this cycle of going to the hospital, getting told it was one thing, taking a medicine back and it not working and it is getting worse and I’m completely unable to walk. mean, I can’t move. I’m using wheelchairs and crutches to get back to the hospital to get told the wrong diagnosis again. And this was a cycle for a few months.

Until one time they sent me to a rheumatologist. I had no idea what a rheumatologist was. I’m just there for another, what I assume is an incorrect diagnosis. And the rheumatologist has looked at me for like a few minutes and he’s gone, oh yeah, this is rheumatoid arthritis. So, I’m thinking, okay, cool. That’s the flavour of the month. That’s what we’re going with this time. Just let me know what pills I take for them.

for it to get rid of it or for it to not work and how I get better. And that’s when he was like, no, no, no, this is a, this is a lifelong condition. This doesn’t go away, which kind of, well, it, it hit me, but it only half hit me because obviously I was used to a situation where if I was sick, I’d go to the doctor, I get some pills, I get better. I keep it moving. And when he’s told me it’s for life, that sort of, I was just like, whoa, but I was only half whoa because I didn’t even believe it because I’ve been lied to so many times. So it was only when the medication he gave me started to work when I was like, damn, that’s actually what it is. Like I do have this arthritis thing that he was telling me about.

Debbie: And then that must have been really quite hard to take in because obviously you were told so many times it was something else and so half believing that it could be this but then obviously when the medications then were starting to work, how did that impact on you and did it impact then on your mental health as well?

James Hollens: Yeah, I was definitely in like a dark place there because I was, well, I’m just realizing that I have this lifelong condition, a lifelong condition that I had always thought was for old people. The only person I knew was my grandmother and she was like 93 bless her. So, for me to have the same, well, I think hers was more osteo, but like the arthritis family for me to have this, was a bit like shocking and a little bit embarrassing at the same time because all of the leaflets I’m getting is of just old ladies doing like aqua therapy and stuff like that. I’ve just got all these like aunties in the swimming pool like brochures, which is a bit of a bad thing to get caught with, but that’s all I have. That’s all they gave me.

Debbie: I can believe that.

James Hollens: I’m like, how do I relate to this? That’s what that making me think that maybe it isn’t even that as well. I sort of like adding to the confusion, but I ended up eventually getting back on my feet. It was like a year basically I was on crutches or in the wheelchair because like I said, my joints were so swollen. Because I think I probably had so much damage from waiting to be diagnosed and getting misdiagnosed that it took me longer to get back on my feet. But I did get back on my feet and I ended up moving to China. I managed to find out how to get the medication over there and all of that. So that helped. And then two and a half years later, everything’s going cool. I’m under control, like managing the rheumatoid arthritis. And I took an office job and before I was teaching, like kindergarten, so was running after, well not running, I was wobbling after four-year-old, five-year-old kids all day. So this is the first time I’ve been sitting down for a living, so to speak. I started getting these back pains and I figured maybe I’m sitting on this office chair, funny, because it’s not something I’ve ever done before. I’ve done my back in. I’ve seen a doctor, he’s telling me it’s probably muscle strains and this. Take one acupuncture and these muscle relaxants and stuff like that. So I’ve done a bit of that. And then it’s coming up to Chinese New Year where we get a big holiday in China. It’s like their Christmas holidays. So, I’m wanting to do some backpacking around India. So I’ve walked to this shop that sells backpacks because I figured that’s quite important for backpacking. So I thought I’d get one. I’ve got, yeah, it’s a good start at least. So I’ve gotten there.

And when I’ve soon as I’ve got there, I’ve just been hit with this fatigue that I’ve never felt before. this just complete exhaustion. I’m used to fatigue, but this was like next level one. And I was just like, you know, I don’t even have energy to look for a backpack in this backpack shop. I’m going to get a cab back and just pass out. And I like, that’s not me on a Friday night, like to be going to bed at five o’clock. and when I’ve woken up, I’m in my bed, but my bed’s actually, I’ve got a mattress topper, which is like a memory foam one that the doctors told me to get because of the back issues. And I’ve woke up in like screaming in agony again. I’ve got this like gravitational force of pain, sort of like pushing me down like into the bed. And the more I try and get out of it, the worse it is. And I’m stuck in this memory foam, like sort of like ditch. And I’m like a spider trapped in a sink. I’m like, can’t roll out. I can’t move. I’m just like screaming every time I try and jolt anywhere. Luckily, my housemates heard me, and they dragged me down to the hospital. long story short, they’ve admitted me in this Chinese hospital.

Katy: What’s that like being admitted in a foreign hospital?

James Hollens: Is very strange because I speak mandarin, but I don’t speak medical mandarin so everything that’s getting floating around is like like I don’t even know like I didn’t know rheumatoid arthritis was in English until I got given it so like all this other yeah

Katy: yeah

Debbie: Was going to say it, even in English, most of the medical terms they’re from Latin. So yes, it’s crazy. So yeah, so then let alone in another language trying to understand what the hell has been going on.

James Hollens: Yeah! but what I did understand was when they wheeled me into the room, the doctor was like, has this foreigner been like drinking or something? And I’m thinking, like, if you’ve got anything on you, please drop me one right now. But I think it was a weird full circle funny moment. Like I thought my first diagnosis was alcohol induced. And now my second one, even the doctor’s thinking it too.

James Hollens: But yeah, so that they were they were trying to do scans on me, but like I literally couldn’t move on to the equipment that they had. They weren’t allowed metal inside these rooms, and they didn’t have anything that wasn’t metal that could support me. And they didn’t have any porters strong enough to lift me. So, I was just lying in this hospital bed, and they would come and suck blood and urine out of me every now and then test it for things.

I was on a lot of strong painkillers that injected my bum and then I don’t really, it was all sort of a blur. I don’t know how many days I was there. All I know is that they woke me up one day and they were like, oh yeah, so we think it’s ankylosing spondylitis. we don’t have anything that we can treat you at this hospital. So, you’re have to go to the specialist one. So, I’ve had to like, wheel down into a cab to the specialist hospital, waiting about eight, nine hours to be seen. And then they’ve told me, we’ve got everything you need. We’ve got the physio, we’ve got the meds, we’ve got like all the rheumatologists, but all of them people are on holiday for Chinese New Year. So, we can see you in like two, three months. Something, yeah. Like maybe two, three months.

Debbie: my gosh. Wow.

Katy: Voho!

Debbie: So, you’ve got your diagnosis but no treatment. So, what were you meant to do?

James Hollens: It wasn’t even a proper diagnosis. It was a suspected because they still didn’t even do an MRI. They couldn’t do a scan. They just thought it was that. And I don’t know what ankylosing spondylitis is. They didn’t explain anything more than that. I can’t Google because I’m in China and it’s blocked. So, I’m like messaging my mom. Yeah.

Debbie: Yep. To be fair, could be a good thing, you know, sometimes.

Katy: Yeah.

James Hollens: But at the same time, so I’m texting my mom like, yo, can you find out what this is? I think it’s spelled like this or whatever.

Katy: And how was your mom, was she receiving most of this information on text?

James Hollens: Yeah, and most of the messages were like complete gibberish I booked a flight back to the UK and my friend helped me pack and I was so out of it. Like she was like, is this enough? Like stuff I told her to put like two pairs of pants and a football shirt in and that’s all I came back to the UK in my check in luggage. Like I didn’t know what I was doing. I’ve turned up like to get changed next day and I was like, oh, I don’t have any clothes.

Debbie: Wow. Then you got back to the UK. Did you then see your rheumatologist that you’d seen before?

James Hollens: Yeah, like, thank God my rheumatologist like sorted me out. was like, yeah, just come in, see me, straight away, as soon as you land, basically. And she managed to like pull some strings. I still had to wait like a few months for the MRIs and stuff because they’re always long to do. But she basically syringed out my joints again and gave me some like anti-inflammatories or like whatever the most she could give me like at that time she did.

Debbie: Good.

James Hollens: So then I finally got the diagnosis a few months later because I actually had to wait for two MRIs because the first MRI they didn’t even look for AS, they just looked for… I had a… I’ve got some slip disks, apparently I didn’t even know anyway, and they just saw the slip disk and wrote the whole entire report on the slip disks and no mention of even looking… Yeah, so they got confused, they got sidetracked and just started writing about disks and didn’t even mention the AS stuff so I had to wait for another one and for them to specifically look for the AS and then they did and they were like, yeah, now you doubled up now. And again, that was another year until I could walk again. And luckily that I got on Biologics and they worked a lot for me. I changed my diet, lot of physio and everything and I’ve got back on my feet just in time for the pandemic. So yeah, so I can celebrate real hard. Yeah.

Debbie: Perfect timing. Yeah. Allowed out for that hour, weren’t we? It was so I assume you got letters saying you were vulnerable person then.

James Hollens: Yeah, I didn’t see another person for a year and a half. I was on like the mad shielding list. Like was on house arrest.

Katy: Yeah. Yeah.

Debbie: Yeah, yeah, we were as well.

Katy: Yeah. So, this is when I’d set up my Instagram account, and I found all these people in a similar situation. Actually in terms of your social media presence, which is huge what kind of led you to build your presence on Instagram and other platforms?

James Hollens: Literally that literally COVID I was that yeah like but I didn’t ever plan on doing it basically I got a good friend of mine who does a lot of charity work helping people in Kurdistan and things like that and every time I would meet up with her for coffee is like we’re at university you haven’t catch up she’d tell me all these outrageous things she’s like I saved these kids from ISIS and stuff like that like this mad stuff and I’m like yeah I went I got drunk in the Philippines or something like on my school holiday in China. Like I had nothing to compare to like her stuff, and I was always like really in awe of her and I was thinking like okay, I can’t remember how long they said it was like it was meant to be three months that we were locked inside like the vulnerable at first. Yeah, and so I’m thinking okay cool I’ve got three months to myself what can I let me try and do some charity work in the time and I don’t know much about some of those kind of things how I would help them, but I know about living with arthritis. So, I reached out to an arthritis charity and asked them, is there anything I can do to help during lockdown? I’m thinking, I don’t know, you got some admin work or something like that. Just like, not even paid, just like volunteer, do a little, do something good with my time. yeah, was it the same? All right, great minds, great minds.

Katy:  Yeah, I did something very similar so it’s quite interesting. Yeah.

Debbie: I did as well actually,

Katy: Might have been different charities, but yeah, similar. Yeah.

James Hollens: I thought I was just going to be doing some like, like random labour They asked if they could call me and talk about my story. And I basically told them what I just told you. And they were like, yo, can we write an article about this for the website? And I was kind of umming and ahhing because I never really told anyone about my arthritis because I was a little bit ashamed of it. I didn’t, I didn’t.

Katy: Very similar again. I’d not really talked about it that much. I’d done bits of stuff, but I’d not really opened up about what it felt like.

Debbie: No, and I was diagnosed as a very young child and the amount of shame that I felt, again, I never spoke about it at all. So, what made you then change your mind to then talk about it?

James Hollens: I think it’s because I knew I was locked inside. like, I hadn’t really told even my friends and that I didn’t think it was a sexy thing to be like, for like girls to find out and stuff like that. Like I would make up when I was out of my crutches, I’d make up all sorts of excuses. I played games of like, what’s the most outrageous lie that I can tell this person that why I’m on crutches.

Katy: What was the best one? What was your most outrageous?

James Hollens: I don’t know. I made the biggest mistake was telling some Australian girl that I had a surfing attack or something like that. And she’s like, yeah, which beach? And I’m like, oh no, she’s onto me. Started saying terminology I’d never heard before.

Katy: Rip curl. Is that a terminology? Got no idea.

James Hollens: Yeah, yeah, I don’t know. Rip that wave, bro. I don’t know.

Debbie: That’s brilliant.

James Hollens: But yes, and I remember like when the one time I did tell someone I had arthritis like a stranger, they’d straight up laughter me. It was like a personal trainer at the gym when I was doing my physio, because people just assume young man dodgy walking football injury. So he was like, what you do? Like I’ve done my ACL and this and I’m like, no, I’ve got arthritis. it’s like, like, it’s like, like belly laughing. And I was like, okay, this is awkward now.

Katy: That’s awful.

James Hollens:  So, after that, I didn’t know if I was ready to come out the chronic closet, so to speak. But I think because I was locked inside for three months, I’m thinking if everyone I know is like finds this funny or something like that, or they think I’m weird, they’re not going to see me for three months. By the time I’m outside, they’ll forget about it. So, what’s the worst that could happen? I was like, okay, you know what, run it. And they did. And then that’s when I saw that there was other people going through the same thing, because I didn’t really even know too much about that charity or like, when I said that, I didn’t even know there was other people, like other people under 97 that had this. I thought it was just, I still thought it was just me that was a weird one. So, when I’m seeing the comments and stuff and people showing me love and like people I know and strangers, like, I was just like, wow, like, there is a community out there. And that’s when I started like connecting with people. And that’s what got me thinking, you know what, let me try and see what else I can open up about it. And then I started posting about it and I was seeing a lot of it was getting a good response. And then I sort of went from it from there and I’ve not looked back basically.

Debbie: Did you go back traveling

James Hollens: It took me a while to get like confident enough to go out again, because I was still like after the whole like hiding from people sort of scared of, I had to basically convince myself that if I saw another person I would die instantly to normalize that shielding period. So then I had to unlearn those things I told myself so like I wasn’t confident to travel now I’m just like, as any second I kind of run away.

Debbie: So how do you travel with your medication?

James Hollens: So, I have like a doctor’s note with me for the pens. It depends how long I’m going for. So, I’ve never, I’ve not gone anywhere long enough where I’ve needed to use a cool pack yet. Cause I think my, my medication could last like three or four weeks after you take it out. Yeah. As long as you keep it away from sunlight and stuff like that, like you keep it in like dry place. it’s good to go.

Katy: that’s really good.

James Hollens: So, I bring it with me in my hand luggage and then I just keep it somewhere like secure, wherever when I’m there.

Katy: How you managed to do your prick and pick in so many locations. don’t know if you want to… yeah. Do want to explain a little bit more?

James Hollens: Yeah, yeah, yeah, I’m…

Debbie: Yeah, it’s not what everyone thinks, by the way.

James Hollens: I just I sort of had this idea of because it was kind of daunting for me the whole medication day having to inject myself. I don’t really get in pain, but it’s just the whole like idea of having to sit there and just pour some metal into you.

Katy: Yeah. Horrible. Yeah.

James Hollens: I’ve never tried the belly one because for me that looks like Seppuku. I would say Hara-kiri.

Katy: I can’t do that either. I’ve never been able to do that. Yeah.

James Hollens: Because I feel like my leg, can, it’s sort of, I’m not forcing it. But so, I sort of started thinking, okay, I’m going to use like my medication day is going to be like my self-care day, I’m going to sort of treat myself like if I’m gonna have to go through this, and I’ll probably have a medicated hangover the next day and stuff like that. Let me have like a good time now let me go do something that makes me happy, see something that makes me happy. So, like, I’ll try and do some like not necessarily traveling, it might even just be like seeing people that make you happy or doing an activity that makes you happy, just whatever it is. And I started just taking a picture of me, like with my prick out in public, my needle. Yeah, you do get a few odd looks. Like it does help if you have a friend with you to take the picture because I was outside the Eiffel Tower. I was outside the, yeah, you just hand it to the stranger and then just get a needle out in front of them.

Katy: That’s so brave.

James Hollens: You have to give it a disclaimer that it’s not what you think it is. It’s getting more challenging now it’s in winter because I’m doing like an alphabet challenge I’m trying to go like through the alphabet and I’m wearing like a football shirt with the same letter too So I’m trying make it up because that’s my I’m a person that likes to collect football shirts So but in the winter it’s tough because I’ve got to wear shorts outside But this this week I found a pair of ripped jeans and I’m using that instead That’s my that’s my little hack there But yeah, I like that’s it’s just a little thing for myself to make myself feel less daunted by the fact of it and show other people to not be ashamed that they’re on medication as well.

Debbie: Yeah, because people generally don’t realize this when you say that you do have inflammatory arthritis or autoimmune arthritis. Everyone always hears arthritis and they’re like, well, why do you need medication for that? Just take pain killers, anti-inflammatories. It’s like, no, no, no, we have to take it to suppress our immune systems because it’s our immune systems that are overreacting and causing it. So yes, it’s a, it’s a great way to raise awareness of that. So hats off to you. please go and look at James’s Instagram. What’s your Instagram handle by the way?

James Hollens: Is at my name is at James Hollens it’s H O L L E N S. I’ve got a weird surname. Yeah

Debbie: Brilliant. We will put that on our show notes as well. But one question that we do ask guests is looking back at your diagnosis, both of your diagnoses, if there was any advice that you would give yourself at the time, what would it be?

James Hollens: I think it would be, don’t be ashamed and open up for one, because I think especially as a man, was even more closed off for it all. was just, at the beginning, I was just punching walls and stuff and not really talking about it. Like I said, I didn’t even, I didn’t ever admit that I had arthritis. I was just sort of just in my room getting angry at my own body and my situation instead of going out and trying to find ways to.

James Hollens: improve the situation. So I was putting my energy into negative stuff. Eventually, I did get over that, obviously, that’s why I’m here now. and to look for other people in your situation and find the community and realise that you’re not alone in it and not trying to do everything alone. That’s definitely the thing that’s helped me the most. It’s helped me accept it. It’s helped me find ways to cope and it’s helped me like from a mental side of things as well.

Because like these conditions is physical but it’s just as much as a mental battle So I think you need to you need to attack both sides of the fight So that’s what I wish I would have done sooner. I’m glad I did do it eventually but I wasted a lot of time in Taking things out like the wrong way So that’s what that’s why I would say

Katy: How do you look after your mental health now?

James Hollens: Exercise is a big part of it too. That doesn’t necessarily need to be any sort of specific exercise either because obviously we have good days, we have bad days. I’m not going to be lifting weights every day. Like I might just be walking or I might just be stretching in my bed if I can’t even get out of it. Do know what I mean? So that keeps me occupied like that and talking to people and like, for example, the people I’ve met online with the similar conditions, we have conversations all the time and that for me helps me balance it because I think a lot of especially young people that maybe they don’t know anybody that has the condition I feel like a lot of our friends pretty big we feel like our friends don’t really understand us because they have no experience with what we’re going through like so even if they’re probably a lot of our friends they might give us advice or something like that. And it’s coming from a good place, but it doesn’t actually help. And sometimes it can be frustrating because we know that it’s like rubbish. So, talking to people that have been there, lived that, it’s more authentic. I don’t know if that’s the right way to say it, but it makes more sense to come from someone with experience, right? Like in that world.

Debbie:  I agree James, is why, we’ve set up Inflammatory Arthritis UK, but also, we’re doing this podcast is so people can actually hear from people that we get it. We really do. understand everything you’re going through. And James, I think your story resonates with so many people as well being told so many times that it could be this, it could be that we’re not too sure. And then eventually when you get that diagnosis, do you believe them? Do you half believe them?

And what does that actually mean on your life as well, having then been told it’s a lifelong condition, but not many people understand what autoimmune inflammatory arthritis is and that it is your immune system. It’s not osteoarthritis. So, then you get the comments. And as you say that as much as people try to help that can say so frustrating and that can actually, I think harm our mental health a little bit because it’s like, if I listen to you, if I just take turmeric, surely that will cure me. Why am I on all these medications and everything? But that’s, you know, but that’s the life we live in really. So, but I really want to say thank you so much for coming on. Your story is really inspiring and you continue to travel. And so, hats off to you for doing that as well. But please do follow James on Instagram. His handle is @JamesHollens. Everything will be on our show notes. We do have two more episodes to come out before we break up for the festive season. So please do catch them. We do have another guest coming on as well and also our reflections on the last year. What has been Katy’s and I’s favourite, and we’d love to hear what your favourite is as well. But don’t forget we are on social media. We are on Blue Sky, Instagram, Facebook and LinkedIn. Please do follow, comment and share all our posts or content. It really helps to reach more people. Please do rate and follow the podcast wherever you get the podcast from. But until next week, Katy, it’s goodbye.

Katy: Goodbye.

James Hollens joins us on Inflammatory! to share his honest and emotional journey of living with two types of inflammatory arthritis, whilst keeping his sense of humour (it is a very funny and honest episode). He talks about the sudden joint pain that hit in his early twenties, the months of misdiagnoses, and the moment a rheumatologist finally recognised rheumatoid arthritis. At just 21, James had to face the shock, stigma, and mental toll of a lifelong diagnosis far earlier than he ever expected.

His story then takes us to China, where a new wave of intense back pain landed him in an emergency hospital and a suspected diagnosis of ankylosing spondylitis. Navigating a foreign healthcare system, language barriers, and a specialist shutdown during Chinese New Year made the experience even more daunting. Returning to the UK brought answers, faster treatment, and eventually a confirmed AS diagnosis, followed by a long recovery supported by biologics, physio, and major lifestyle shifts.

We also dive into the emotional side of chronic illness, from pandemic isolation to the mental health battles many patients face. James shares how lockdown volunteering grew into a thriving social media presence where he raises awareness, builds community, and spreads humour and honesty, including his popular “prick & pic” travel series. He closes with heartfelt advice to his younger self about shame, vulnerability, and finding support sooner.

Key Topics Covered

• Early symptoms and repeated misdiagnoses
• Receiving an RA diagnosis at age 21
• Living abroad and a second suspected diagnosis (AS)
• Navigating a foreign medical system and language barriers
• Returning to the UK for answers and treatment
• Recovery with biologics, physiotherapy, and lifestyle changes
• Mental health challenges and pandemic isolation
• How volunteering led to chronic illness advocacy online
• Travelling with medication & the “prick & pic” series
• Advice for his younger self:
  • don’t be ashamed
  • open up sooner
  • find community
  • care for mental & physical health
  • stop fighting yourself

Connect with James: Instagram: @JamesHollens

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Coming Up

We have two more episodes before our festive break, including another special guest and our reflections on the past year—plus our favourite moments!

Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content.

For more information, head to https://inflammatoryarthritis.org/