[00:00:00] Intro: Welcome to AiArthritis Voices 360, the podcast solving

today's most pressing issues in the AiArthritis community. We invite you

all to the table where together we face the daily challenges of

autoimmune and autoinflammatory arthritis. Join our fellow patient co-

hosts as they lead discussions in the patient community, as well as

consult with stakeholders worldwide to solve the problems that matter

most, whether you are a loved one, a professional working in the field, or

a person diagnosed with an AiArthritis disease, this podcast is for you.

So pull up a chair and take a seat at the table.

[00:00:45] Leila: Hello everybody and welcome to AiArthritis Voices 360.

This is the official talk show for the International Foundation for

Autoimmune and Autoinflammatory Arthritis, or AiArthritis for short,

which is My name is Leila P. L. Valete and I am the health education

manager here at the organization and person living with lupus and

Sjogren's disease. And I am so excited to talk to you today about World

Autoimmune and Autoinflammatory Arthritis Day, which is on May 20th.

And so I'm going to be talking to you today about all of our plans that we

have for this year, as well as we will be having some flashback clips

talking about awareness why we have World AiArthritis Day and why it's

so important to drive awareness for these diseases. So I really hope that

you enjoy and that you are excited for all of the activities that we have

planned. And yeah, all righty. So basically the first thing that I'll be talking

about is the plans that we have for social media.

So World AiArthritis Day started as a movement on social media. And so

social media always remains a big part of what we do for each day. So

we have a few different things going on on social media to celebrate the

day and help bring awareness. Just as a preface world AiArthritis Day is

on May 20th, but as it passes through all of the different time zones in

the world.

So it actually starts on May 19th at 6 a. m. Eastern Time and ends on

May 21st at 5 a. m. Eastern. And so it's a straight 47 hours of bringing

awareness and that's where the majority of the social media part of the

event will happen. And so we have one, our auto plus inflammatory

arthritis equals X campaign, which is pretty much a way to help expedite

early diagnosis, early detection, and early treatment for AiArthritis

diseases.

And so basically we want to show that auto symptoms plus inflammatory

arthritis symptoms equals all of our different diseases. So we have a poster campaign. We also have graphics that you can post on Instagram or other social medias. And we also have three different video trends

that we're going to be getting people to do examples of and basically

helping to tell their story.

So the poster campaign I actually have posters here. If you're on the

YouTube version, you can see one of my posters, and you take a picture

with holding up the posters that have to do with your specific symptoms

of your AiArthritis disease. You can also do that on the graphics posts

for Instagram if you don't want to hold the poster and just want to post it

post the information on your Instagram or other social medias, then you

can do that. And we also have three different video trends that we are

relating to AiArthritis diseases. So the first one is the put a finger down

challenge. So where you would say, put a finger down if you have

experienced such and such.

And so basically trying to pull experiences that unite all the different

AiArthritis diseases or the people having those diseases and having

common experiences. And so the second trend is going to be the, I have

an AiArthritis disease, of course, which is just another vehicle to be able

to bring awareness to the different experiences that we all have in our

day to day lives.

So, I would say, I have an AiArthritis disease, of course I have to go to

the specialist every three months and get my blood drawn every three

months. Things like that, which are basic things that we have to do as

patients with chronic illnesses, but people may not know that that's how

often we have to go and things like that.

The last video trend is going to be basically a pointing trend. So you

would point to your left side, point to your right side, and those are going

to show up as your auto symptoms and your inflammatory arthritis

symptoms. So yeah, those are the three different videos that we have

and all of the different components of our auto plus inflammatory arthritis

equals X campaign.

You can find all the different information on our website and we will have

the link here in the description and also on any of the different sites that

you're going to be listening to this. So we will make sure to have the all

the links for all of the information that I'm giving here for you to be able to

participate.

So yes, that is our first thing that we will be having for social media. We

also have patient org participation where we have a race car. I, I don't

know if I mentioned this earlier, but World's Autoimmune and Auto

Inflammatory Arthritis Day has an auto theme as in cars, raceways, the

under the hood, all the different things we use, basically a car or an

automobile to compare our diseases and our body to diseases. So, you

know, a car may look completely fine on the outside on the body, but

once you take a look under the hood, you could have a completely not

working engine. You can have all these different things wrong with your

vehicle.

So that's kind of an example or a metaphor for invisible diseases. So

yeah, we focus a lot on the auto theme as if you're on the video version,

you can see that my zoom background is actually a raceway. So yeah,

we use the auto theme just to kind of catch attention and to use it to get

the point across of basically what invisible disease is, what AiArthritis

diseases are, and what the difference between osteoarthritis and

AiArthritis diseases are.

So those are the main points that we try to get through for this

awareness day. But yeah, so we have patient organizations who are

participating. We provide them with a car and we put them them all on a

poster in order for us to show the different patient organizations that

represent the different diseases that have participated.

But we also have a social media kit with different graphics and

awareness posts and captions that we provide to those patient

organizations to be able to post on their own social medias for the day of

awareness. So those are the different social media components that we

have. And the next thing that we have going on is our race a thon.

So this is going to be our second annual race a thon. And a race a thon

is basically our auto theme combined with a traditional telethon, if you

ever remember seeing those on TV back in the day. Basically with the

telethon, there will be a TV show that has a different, has different

events going on.

And you, there's a number on the screen and you call the number to

donate so that is kind of what the race a thon is doing. We're promoting

awareness and education about our diseases, but as well, we are using

it as a fundraiser for AiArthritis, but also the other participating patient

organizations for them to also be able to raise funds for their own efforts.

Basically on the race a thon, we will have different segments that may

show what everyday life is like for people with our diseases. There may

be different resources that are shared during that race a thon for people

to be able to increase their quality of life having our diseases. There is

going to be information about exercise, self care, and all of those

amazing topics that can be covered for all the different AiArthritis

diseases.

And as well, with the race a thon will come a resource library that we get

basically up to three resources from our participating patient

organizations, and we are going to share them with the general public to

be able to have a resource library for all of the different resources from

the participating organizations.

So we are so excited to spread the wealth, share the knowledge, and

provide the arthritis community and those outside of the arthritis

community or may not know that they are a part of the community yet

with all of the amazing different resources that these patient

organizations have worked so hard on.

So we are excited to share all of the resources as well. And last but not

least, we have our fundraiser that we are holding. And our fundraiser is

going to be held on the website called Give Butter. And Give Butter is

basically a very user friendly, easy to use easy way for you to be able to

donate.

We have text to donate, we have a QR code that you'll be able to donate

with, we also have a page for you to go and click on. You can read what

World Autoimmune, Autoinflammatory Arthritis Day is all about, what the

race a thon is about, what we will be using the money for, and yeah all of

those amazing things.

What's also very cool is that there is a team aspect. So we have different

AiArthritis staff members and volunteers that have their own page that

tell their own story of why they are connected to AiArthritis and why they

would love to raise awareness for these diseases. So, I mean, it adds

that personal aspect to be able to support the volunteers and the staff

members who are trying to raise money for this amazing organization.

So yes, I am so excited for you all to see all of the different Give Butter

pages. And it's going to be an amazing way to just spread awareness

still, but also be able to raise money for our organization. So we are very excited about that. And again, I just wanted to emphasize that this is for

our organization's fundraiser, but there will be other patient organizations

that are raising funds and that you can also donate to.

So, that's also something to keep in mind. So yes, The best way for you

to see what we're up to leading up to race day would be to follow our

World AiArthritis Day social media on Facebook and Twitter. It's going to

be @AiArthritisDay and on Instagram it's going to be

@WorldAiArthritisDay and I will make sure again to have all of those

links in the description as well as the GiveButter link for our fundraiser.

And I did forget to mention what time and what date our race a thon is

going to happen on. So our race a thon is going to be on Sunday, May

19th, and that's going to be starting at 11 o'clock eastern time, and then

it's going to end eight hours after that. I believe that's 7 yeah, 7 o'clock

Eastern time. So it's going to go from 11 to 7 Eastern time on May 19th.

We will have that live stream video ready for playback by the next day so

that we can also replay it on May 20th, the actual day in the United

States for World AiArthritis Day. And yes, so that's going to be held on

Facebook, on our Facebook page, Facebook.com/AiArthritisDay. So I

really hope that you will tune in and check out what all of the different

resources and segments that we have on that live stream. So that is

what we have for World AiArthritis Day 2024. You are still going to be

hearing after this a few more clips about the importance of raising

awareness for AiArthritis diseases and why we have this day.

So thank you so much again. And yeah, stay tuned for the clips.

[00:12:35] Tiffany: Oh yeah, you heard it. It's revving some engines

because we are going to talk about World Autoimmune and

Autoinflammatory Arthritis Day, World AiArthritis Day for short. And that

is an annual event that happens on May 20th every year, was

established by International Foundation for Autoimmune and

Autoinflammatory Arthritis in 2012.

And historically, we have hosted this event online, it reaches about 60

countries around the world. And we usually have about three to four

dozen non profits are non profit awareness teams that sign up to help us

along the way because together we are stronger, right? Right. So, this

year is going to be a little bit different and that's why we wanted to take

this opportunity to share this with you all because we know that you care about this cause and wanted to learn more about how you could get involved.

So as we said, the event is historically conducted online. We have social

media pages on Facebook, Twitter, and Instagram, which are at

AiArthritis Day. You can make sure that you like those so that you're all

ready. During that time, we focus on awareness and education to help

the public and some practitioners, like maybe primary care physicians,

hospitals, nurses.

We try to teach people more about our diseases and in particular, the

type of arthritis, the autoimmune type of arthritis that's associated with it.

Hence, differentiating it from the more common type of arthritis or

osteoarthritis. So we use that word auto, you see where I'm going, where

the car was revving in the beginning.

So we use the word auto and play on that to make sure that people

understand that our type of diseases and the arthritis associated with it,

whether that is an autoimmune or an auto inflammatory diseases, just

those couple dozen that have the arthritic component are all very similar,

also have some unique features.

But the point is, this is our day to teach the world about these diseases.

We also choose auto or automobiles or auto racing theme because our

diseases are full body. And the auto body and the race for awareness,

so see how that all ties in together. And we focus on making sure that it

is clear that our diseases affect all types of people in all parts of our

body, including joints, tissues, and organs.

And really the awareness is necessary to improve the lives of the 450

million people worldwide that are affected with these diseases. We hope

that our race to awareness and education will educate the public, but

also by doing that will lead to earlier detection, referrals, and diagnosis in

addition to addressing those misunderstandings associated with these

diseases.

So the topic, well, we're going to go back because it is May and we're

going to talk about The word arthritis, and we have visited this on the

table quite a few times since we started the show in late 2019, and we

choose May to revisit because in the United States, it's Arthritis

Awareness Month, and in some other countries too.

I'm not sure Eileen, I don't believe it is in Canada. I think it's a different

month.

[00:16:19] Eileen: It is September for Canada, but I do celebrate as well

because you're our neighbors.

[00:16:24] Tiffany: That's right. And then also it is World Autoimmune,

Autoinflammatory Arthritis Day or World AiArthritis Day, May 20th which

our organization established way back in 2012 as one of the first

programs we ever did, and that day is used to celebrate the

differentiation of our arthritis from other arthritises and really bring

awareness and education to our community.

So in honor of that, we are putting it back on the table. And when I say

back on the table. That means it is called a step five. So for those of you

who have tuned in our show for a while, you will know that we've, in

addition to these 360its, we have two versions really of this main show.

It's a step two, which means we've identified by listening to patients.

There was a big issue. And step one of our process, we put it on the

table in step two. So we've done that. We'll link you to all of those

episodes so that you can check some of those out. We're going to revisit

those topics and move forward in a larger conversation about it and a

conversation that can lead all the way to what we call step six in our

process and that is resources or solving the problem in some way.

So we're going to do all of that. We are amazing. We're going to do all of

that in 45 minutes. Holy cow. All right. So I'm going to turn this over to

some of our co hosts here to start the conversation and the first thing I

thought we do by just throwing this on the table and revisiting it is just

talking about why you think that awareness about our kind of arthritis,

autoimmune arthritis, autoinflammatory arthritis, the type of arthritis

associated with these auto diseases.

Why is education and awareness so important?

[00:18:15] Eileen: I think it's important because when I was diagnosed

with rheumatoid arthritis at 29, I was so shocked that what I was

experiencing was even arthritis. I actually made my rheumatologist test

me for everything other than RA because I was like, this doesn't make

sense.

I thought, arthritis was just joint pain. So I actually fell victim to the

misconceptions of arthritis. And so I think the awareness and the

education about there to everyone, not only helps people understand

that arthritis is a serious disease, but also help them recognize the

symptoms so that they start treatment earlier because diseases have

better outcomes when treated.

[00:18:53] Katie: And like Eileen said, I was diagnosed three years later

than planned. So I was having weird symptoms, chronic fatigue, joint

pain. And I was in high school at the time so doctors were like, Oh,

you're just an active teen. You have growing pains, stuff like that. But,

you know, even with my dad having psoriasis, there wasn't anyone in my

family or friend group who had any form of arthritis. So even with the

knowledge of having a family member with an autoimmune disease, it

wasn't really looked upon that I would have arthritis at 18. So, you know,

when I went to see my pediatrician, she was like, Oh, you're fine, but I

kept kind of egging her on like, I basically went on Google and did what

you're not supposed to do and pretty much self diagnose myself.

And then I went back two years later and I was like, you know, my hands

look a little different and it was more something that I could notice. And

she was like, yeah, you should go see someone. And ironically, her

sister happened to be a rheumatologist, but throughout those two years,

I was complaining to her she didn't find it necessary for me to go even

seek an opinion. So we just kind of, you know, left the doctor's office like

everything's fine, you know, so, but it really wasn't. And that's kind of

why I feel that it's important to discuss these things, because there's a lot

of people out there, even with social media and a bunch of like

awareness.

There are people out there who do not have the answers still, even with

modern technology and everything that we have going on. So that's why

it's important to sort of talk about these things.

[00:20:19] Kerry: And I would just jump off of that with, after all of this

time and all of this, still not having the answers. I mean, that really is just

the biggest and most important part of all of this, because the, the

answer is to figuring out what it is that's going on with us.

When we are feeling pain, not only in our joints, but in all these other

places that really don't make a whole lot of sense, but also so many

other symptoms that affect so many other parts of our bodies in trying to figure out what it is that's going on and trying to figure out what's wrong.

It's so important, both for the actual, tangible, physical, medical

diagnosis and treatment, but also in how we are perceived and

understood by the people around us.

And that's the people in our families, that's the people that we work with,

that's just general society and kind of how they look at us with arthritis,

with disabilities and all of that. And the more we can raise awareness,

the more we can talk about what this is and what it means, the closer we

get to that kind of understanding.

[00:21:28] Effie: I was going to add to that kind of more like the general

public awareness part of it, the way we talk about it too, because a lot of

the times we kind of even ourselves just describe it as arthritis. But when

you say rheumatoid arthritis, or psoriatic arthritis, or you give it a

different name or more of a name, then people like, oh, that's not just

arthritis that is something else.

And then on the day when we start talking about them, you know, more

people are like, oh, I've heard of that. I don't really know what that is. So

it's the day to learn what this is and understand more about it. And then,

hopefully, people having those weird symptoms, having those

unexplained, no diagnosis, know what to ask for, know what to look into,

know, you know, what these things actually are, and then hopefully the

entire disease group gets more respect and more acknowledgment for

what they actually mean to live with them.

[00:22:19] Tiffany: Wow, you all just had really, really great examples. I

have nothing else to add, show over. But seriously, what you all really

explained, very poetically, almost was a journey and you went from

detection and diagnosis issues to what's going on with me to

misunderstandings, which we're going to circle back on as well to public

education.

We sort of touched on doctor education because that all rolls into it. And

we will then lead into also talking today on this overlap, which we said in

our introductions is then you have this issue of, well, is the arthritis being

ignored? Is it being ignored because the doctor doesn't think I'm have it?

Am I too young? Is it being ignored because it's not typically associated

with my disease? There's just a lot that goes around the arthritic

component that if we understood it, we meaning family members, meaning doctors, meaning the public, we could really start to see better

detection, better diagnosis, earlier treatment, better quality of life.

It all equals into this equation, just on this word. And then, it even equals

into better overall health care regardless of where you live, regardless of

what country, and better outcomes for the health care system. Because

if we're being treated early and we have better outcomes, then we have

less chance of having comorbidities from uncontrolled inflammation.

So, those are all really, really good points and lead us up right into the

heart of this conversation that we like to call at the table. My name is

Tiffany. I will be your host and welcome to the table, pull up a seat and

join the conversation. So what is a mini episode you may ask? Well,

these are short versions of our podcast that we air every Wednesday at

7pm Eastern time and they address issues that we've identified either

require immediate action or there's something that we are already

working on and we want your input to help develop resources to then put

back in our community so together we can change the stories of

tomorrow.

So the topic we're going to talk about today is the need to differentiate

arthritis types. And why is this important? We believe doing so will

improve the misunderstandings that are associated with this disease and

in turn will help expedite detection of the autoimmune and

autoinflammatory diseases where arthritis is a major component.

We also think that by addressing this and creating educational materials

that it can help the conflicts and relationships that currently exist

because of these misunderstandings of what a person really is dealing

with. And then eventually both of these things will improve a person's

quality of life, it can improve their health outcomes, and then if that

happens, well we could actually start to improve the overall cost of

healthcare around the world. And wouldn't that be fantastic? So Let's get

down to the conversation here. Why do we want to do this and what are

we trying to achieve? At the root of the problem is that over many, many

decades, the word arthritis has only been associated as an umbrella

term meaning joint inflammation or joint pain.

And that's what it is but the problem is that there are different types of

arthritis. And if the general public only assumes that arthritis is

something that is a part of aging or happens in a mild form. Oh, it's just

something that I can take an over the counter product and I'll feel better.

That is doing a disservice for the people who really are suffering with the

various types of arthritis.

Whether that be the more popular osteoarthritis or our types, which is

the arthritis associated with having an autoimmune or an auto

inflammatory disease, we like to call AiArthritis. So the fact of the matter

is, we all have points of reference. We know what we know. So if we

think of the word arthritis, what comes to mind?

I mean, you might say, hey, I have arthritis. I have it in my knee or I got it

from an injury. That can happen really at any age or maybe you have the

typical aging that just happens naturally and all of that falls under

degenerative arthritis, which is osteoarthritis or the most common form of

arthritis.

And even with saying some of those things that I just mentioned, it does

come with this assumption that it is a minor situation, a minor

inconvenience that might not be that painful. But the fact of the matter is

even within that type of arthritis, it can be extremely serious to the point

where the cartilage has worn away and it is bone to bone.

And that, of course, is extremely painful. So even in osteoarthritis, I want

to make it really clear by differentiating we are not in any way, shape or

form suggesting that one form is worse than the other. They all have

variations of severity. But the reason we want to start differentiating and

our arthritis types stems from the misunderstanding of the word.

So the first issue is relationship conflict. So think back to a situation that

you were misunderstood and it's frustrating, right? You say, oh no, you

have to understand and you jump up and down, well, maybe I don't

know, depends on how, how angry you are, I guess. But it's frustrating

but you get over it, right?

The next day everything is okay. Well, what if that happened every day

or close to every day? Because that's the reality for people living with

AiArthritis diseases. People say, oh, I'm so sick of people thinking that

my arthritis is this mild form and I'm too young to have this. I mean,

there's just so many things that occur with the frustration surrounding

being misunderstood in general. But then it's deeper than that because

the other thing that's different about our arthritis type is that these are

part of an autoimmune or an auto inflammatory disease. There are over a hundred of those, but only a handful actually present with most

patients with arthritis as an early clinical component.

And that's important to note because this happens at a cellular level and

the inflammation travels through the bloodstream and it'll attack the

joints, tissues, organs, full body. And the pain that's felt is from initial

onset. So as soon as that cellular level activity in the immune system

starts to interact, we're feeling that pain.

Now it's going to take months and often years before any damage

occurs that anything could be seen on a radiographic image. So what

happens is this invisibility combined with young onset, mind you, 20 to

40 years of age typical of onset in adults, and then you're looking at any

age in children. So you've got invisible, it's not showing anything on

radiographic images, all must be in your head, you're too young to have

this.

So that in itself not only causes conflicts in relationships and

misunderstandings and what a person is experiencing, but it blends into

point number two, and that is that if general practitioners, family, doctors,

hospitals, nurses, kind of our first line intervention people don't

understand that there is a difference, it can extremely delay detection.

And when you delay detection, you delay diagnosis, you delay therapy,

and then a person could have a compromised quality of life, less chance

for remission, and that's when the health care costs really soar. So you

can see how understanding the differences can really change the

paradigm of many facets of our health care system as well as the people

living with these diseases.

I know when I was first going to doctors to seek out advice on what was

happening with me, I had a typical autoimmune features, which was

fatigue, I had a fever for four and a half weeks straight that wouldn't

break. I was exhausted. I was very short of breath and winded feeling

like I had the flu. And that's what was focused on, the systemic, the full

body things.

And everybody kept ignoring the arthritis. We thought at IFAA when we

founded the organization, wow, if we just focus on this small group of

diseases and we can educate practitioners, if somebody shows up with

these symptoms that are classic autoimmune or auto inflammatory and

they have arthritis, wow, could we expedite detection and put that whole motion forward. So the things that we are asking for your help on would

be your ideas on how we can create better educational materials to

educate not only our family and our peers and our significant others but

also medical practitioners and the public. Because think about it if

anybody listening has one of these diseases before you became

affected, you were the public. So if you as the public knew about this

type of arthritis, maybe you would have gone to a doctor earlier. So it all

really feeds off of each other. So Don't forget to visit our podcast page at

AiArthritis.org/podcast, where you can meet some of our future co hosts,

meet our production team, learn more about this podcast and what we're

trying to achieve. And of course, we're always looking for your support.

So learn about ways that you can donate and support our podcast to

keep this alive. We appreciate it to all our existing VIPs who support us

monthly and make things like this happen. So thank you for joining the

conversation today. Pull up a seat and let's start talking.

[00:32:15] Leila: Alrighty. Well, thank you so much for tuning in to

episode 97 of the AiArthritis Voices 360 podcast you can check the links

below to see all the ways that you can get involved in World AiArthritis

Day and where you can follow us to see what we're doing up to the race

date for World AiArthritis Day.

And remember World AiArthritis Day is on May 20th as it passes through

all time zones. Our race a thon will be a live stream on Facebook on

May 19th, starting at 11 a. m. Eastern and ending at 7 a. m. Eastern.

And we really, really hope to see you there. We also really hope to see

you on our GiveButter page in order to help raise funds for our

organization and all the other different organizations.

You can check them out on their websites once the participants are

announced for this year and see how you can also support their

organizations. Thank you so much again for tuning in, and we'll see you

next time.

[00:33:16] Intro: AiArthritis Voices 360 is produced by the International

Foundation for Autoimmune and Auto Inflammatory Arthritis. Find us on

the web at www. aiarthritis. org Also, be sure to subscribe to this podcast

and stay up to date on all the latest AiArthritis news and events.