September 19, 2024 • 33 mins
Andrea Wool is the founder of Autoimmune Strong, a community for those with autoimmune disorders seeking exercise that heals rather than harms. Andrea shares her experience with chronic pain, fatigue, and her quest to find a sustainable, gentle approach to fitness. Diagnosed with fibromyalgia and multiple autoimmune diseases, she turned her struggles into a mission, helping others transform their relationship with exercise and health. Stepping back into history, we trace the evolution of our understanding of autoimmune conditions through the work of three pivotal doctors.
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Speaker 1 (00:01):
Welcome to Our Skin, a personal discovery podcast. I'm your host,
Holly Fry, and it is wonderful to have you here
with us. Connection is what this show is all about,
specifically connecting about things that we are sometimes afraid to
talk about. Today, we're going to be exploring the ups
and downs, past and present, personal and universal troubles we
(00:22):
have with our skin. Our skin is our most visible organ.
What happens on our skin affects the rest of our lives,
especially when dealing with a chronic condition. Getting diagnosed with
one of these, like psoriasis, can be overwhelming, but you're
not alone. Each episode features a personal story of resilience
and grace. But our personal stories are threads in a
(00:45):
larger tapestry, and there are lessons for us in the
history of how we treat our skin and the progress
we've made together. Caring for our skin is caring for ourselves.
Whether you're seeking inspiration for your own journey or curious
about the history of our skin, you'll find empathetic, transformative
conversations here on Our Skin. I am joined today by
(01:09):
the incredible Andrea wool And. Andrea is the founder of
Autoimmune Strong, an online hub and community for people who
want to find exercise that works with their body and
not against it. For people living with autoimmune disorders, exercise
can be such a double edged sword. Not enough can
result in stiffness, fatigue, and pain, while exercising in the
(01:32):
wrong way or too hard can also result in flare
ups and pain. Again, so it's very careful needle the thread.
And Andrea knows this Catch twenty two firsthand. Welcome Andrea.
What an absolute treat to get to spend time with
you and dive a little deeper and talk about all
things autoimmune. Thanks so much for having me, Andrea. We
(01:53):
talk a lot about psoriasis on this show, but I
do want to acknowledge that you personally don't have sarius.
Speaker 2 (02:01):
I do not. I do have multiple autoimmune conditions, and
many of my auto imune strong members have soriasis, so
we work a lot with people with psoriasis. My husband
and son also have it, but I personally don't. I
have a cocktail of many other things, and I hope
that to never add another piece to that puzzle. I
(02:21):
hope we can keep it the.
Speaker 1 (02:23):
Way it is.
Speaker 2 (02:24):
I do know a lot aboutsoriasis, and there are lots
of ways that exercise and psoriasis really partner. Well.
Speaker 1 (02:31):
I also want to talk a little bit more about
your story. You just mentioned you have multiple autoimmune conditions.
You also have fibromyalgia. Will you talk to me a
little bit about your diagnoses.
Speaker 2 (02:43):
Absolutely, I was diagnosed after the birth of my second son.
I've had health issues my whole life, and even as
a young kid, I was always in and out of doctors.
My family didn't really know what to do with me
because I always had something. I had a pink eye,
or a strep throat or of some kind of IRA.
I was always very susceptible. I had reconstructive ankle surgery
(03:05):
when I was twelve, and at the time, there wasn't
a lot of information about autoimmune disease, so they just
knew I had ligament laxity. They didn't know why what
was causing it. We now know that I have EDS,
and so we're now understanding that that is a chronic
(03:25):
illness issue and that that is what led to the
surgery that I had when I was twelve, But I
didn't learn that until I was almost forty. So it's
so interesting to learn things about your own diagnoses and
then look back on your health history and be like, oh,
that makes a lot of sense. So I had all
these chronic health issues when I was young, but nothing
(03:47):
really came to a head until after the birth of
my second son. I was able to get to the hospital,
but not able to get into delivery room. I gave
birth to him in the hallway, almost in the elevator,
and it was a very fast birthway I learned later
is that autoimmune diseases can be triggered by traumatic events.
And even though the birth of my son is certainly
(04:08):
not an emotional trauma, it is a physical trauma, especially
when it happens in that kind of way. And they're
all sorts of stories of women being diagnosed with autoimmune
disease after the birth of a child because it is
so traumatic for their body. So I had two children
at home, I had a newborn, I had a full
time job that I went back to after maternity leave,
(04:30):
and over the course of eight months or so, I
was a mess. My hair was falling out, I was
falling asleep everywhere, I was gaining weight instead of losing it.
Speaker 1 (04:40):
You know.
Speaker 2 (04:40):
There were just so many problems, and I went to
a whole bunch of doctors and they were like, well,
your postpartum. You just need to get through this postpartum
phase and you'll be fine. And my husband and I
are looking at each other going like, I'm not fine.
When am I going to be fine? I went to
a GI specialist and she was like, I don't really
know what's going on with you, but I will tell
(05:00):
you that a lot of people have had success by
going gluten free. I don't know what your diagnosis is,
but you can try that. After a month, I started
feeling better and I was like, Okay, this is something.
What's next? And within three months I was functional. It
was my gynecologist who said to me, it looks like
(05:21):
you have a swollen thyroid gland. You should go see
an anthrocinologist. I did and he You know, true to
form in the medical system, it's never smooth. You know.
The nurse calls me after I went through a whole
bunch of testing and the nurse called me and said, oh,
you're Hashimotos. Do you need up your dose or what
do you need? And I was like, wait, did what hashimotos?
Speaker 1 (05:43):
Like?
Speaker 2 (05:43):
Can you rewind? Thank goodness for Google. I still do
this to this day. I take the blood test that
come back, I google it, what does this mean? So
hashimotos diagnosis came next. Eventually I was then diagnosed with
celiac disease, and then I was diagnosed later, like many
years later, with EDS, and there's suspicion that there's maybe lupis,
(06:05):
but they can't really tell me for sure yet, and
there's a lot of question marks. But at the end
of the day, I am able to work with my
doctors and they get surprised. They're like, I don't know
what magic this is happening because I'm not on medication
for my hashimotos. I don't say that everybody is able
(06:25):
to get off their medications, but I was, and I've
been unmedicated for the last five years.
Speaker 1 (06:31):
For people that don't experience something like this where they
can eat kind of whatever they wish and it's not
going to lead them to having a horrible evening or
day or whatever, it's easy to think that there's wiggle
room where there isn't. But I'm really curious, was there
a moment where people that had maybe felt that way
in your life started to see the improvements that you
(06:53):
were having and that you were returning to yourself. Did
you see that light bulb moment where they were like,
I get it, now, I get it.
Speaker 2 (06:59):
Oh yes, Nobody in my life questions any of it.
They're like, this is what Andrea does because look at her.
I run my own business, I am a full time mom.
I'm an athlete again.
Speaker 1 (07:10):
You know.
Speaker 2 (07:10):
I am able to travel, I'm able to go out
to dinner and still have energy the next day. I
live the life that I want. And everybody around me
has seen that so much so that even back in
the day, people would see me at the supermarket and
they would whisper to me and they'd say, you look amazing.
What did you do because they had seen me the
(07:32):
year before where I look like I was dying. What
I've learned is that autoimmune disease is an invisible illness.
Nobody knows what you're hiding. Right. All they saw was
what I had been and then what I became. They
would say like, what happens? And I'm like, oh, well,
I was diagnosed with these autoimmune diseases and I was
able to turn my life around in this kind of way.
And they're like, oh my gosh, tell me how, because
(07:55):
I have. And then they'd share their story with me.
I have X, I'm desperate what do I do? And
that actually led me to after I had gone back
to school, I opened up a health coaching clinic and
within a month I had a wait list of like
three to four months. And that's actually how otto I
mean strong was born was because I was teaching nutrition
(08:16):
and fitness and I was like, well, nutrition is hard
to do online, but I can put up some exercise
videos and the people who are waiting to work with
me can like start exercising at home. And those exercise
videos became so popular that it just took off from there,
and I think a lot of people were really desperate
for that healing, and my healing was palpable to the
(08:37):
people who hardly knew me, which shows you how how
bad it was and how good it became.
Speaker 1 (08:43):
I want to talk too, about your own journey in
that regard of self education, because once you had this
diagnosis and you know that this is an explanation for
what's been going on in your life and that it's
something that you're going to have to deal with going forward,
what were the things that you immediately thought about? It
(09:05):
was this something you knew about? Did you understand the
idea of autoimmune diseases before you realized that you had one.
Speaker 2 (09:13):
You know, the word autoimmune. I had never heard it before.
I never heard gluten before. I never heard hashimotives before.
I think nowadays, with social media, there's a lot more awareness,
but back then there was nothing. So I would go
home and google what are healthy foods?
Speaker 1 (09:29):
Right?
Speaker 2 (09:29):
You know, I didn't even know because I had been
taught that healthy foods were, you know, low fat packaged
food items. And so now fast forward twelve years, I'm like,
my food is delicious. Not only is it nutritious, but
I love what I eat. It is so much yamier
(09:49):
than the diet than I had prior. So that's the
food piece. And then the exercise piece. I had known that.
I realized that the exercise I was doing wasn't really
working for me, but I didn't really know what exercise
was going to work for me. So I decided to
become a personal trainer. What I learned there is that
(10:10):
you don't learn anything about chronic illness as a personal trainer. Nothing.
You spend about half a module on special populations, which
is what do you do when a client has like
heart disease or heart failure, and that's pretty much it.
You don't learn anything about how to treat someone with
(10:31):
autoimmune disease. And so I was like, Okay, well this
isn't very helpful. So that's when I started. I spent
like a year and a half putting together the science
on exercise and autoimmune disease because I wasn't worried about
helping other people at this moment. I was literally just
trying to develop a course of action for myself, and
(10:51):
so I was my own guinea pig, and I was
you did a lot of trial and error. There were
a lot of things I did wrong. And then as
I got these clients, I was open with them. I
was like, I'm still learning, We're going to try things.
And then once I put the videos up online, now
we have like thousands of people all across the globe
using these exercise videos and giving us feedback. So we
(11:13):
are really learning this works, well, this doesn't work. This
is what works, you know for someone with rheumatoriy arthritis,
but maybe it doesn't work so well for somebody with
something else. So you know, we're constantly learning and getting
feedback from everybody. Because everybody is a little bit different.
Speaker 1 (11:29):
I want to talk a little bit more about autoimmune strong.
Do you see people that come in that are trying
to help manage their psoriasis and including movement in it
and what is that like?
Speaker 2 (11:41):
Yeah, because what a lot of people have figured out
through their personal experience is that their psoriasis gets worse
when they exercise. But also, you're supposed to exercise for
your health, So how do you exercise for your health
but also not trigger us viais flair because that's super uncomfortable. Ultimately,
(12:03):
here's the link. Sooriasis is triggered by stress. Exercise is
stress on the body. That's how exercise works. And the
way I explain it is that all humans autoimmune ssoriasis
are not They have a baseline of stress tolerance.
Speaker 1 (12:21):
Right.
Speaker 2 (12:22):
Think of a glass of water. You have an empty glass.
That empty glass is your ability to handle stress. Then
you get a diagnosis of siasis or an autoimmune disease.
You have to fill up that glass with a little
bit of water, like add an inch. Now you have
less room for stress. You have water in there that
(12:42):
represents the stress. Because even when you're sleeping, your body
is fighting a chronic illness. Then you add in your
commute to work. Then you add in the it's super
hot out and your body is stressed. You add in
all the things that humans have to deal with, and
we have less stress tolerance then people without chronic disease,
(13:03):
crisis or autoimmune So you have to find that happy medium.
I call it the GOLDILCS principle that like sweet spot,
you can't exercise too little, but you can't exercise too much,
And that sweet spot is something that really only you
can determine. But I have lots of tools to help
you figure out what that is.
Speaker 1 (13:22):
Sort of a tool that happens as a result of
autoimmune strong is that there is a huge community aspect
of it. Will you tell me what it's like When
people join the Facebook group or they start following you
on Instagram, even if they're not looking for a trainer,
there seems to be this really really active community of
support and information sharing.
Speaker 2 (13:43):
Well, look, the reality is is that we've all been
to the doctor and the doctor tells us that we
need to exercise and lose weight, right Like, that's a
very common It is a very common You go in
here for your appointment for fifteen minutes you're like, I
have all these problems, and they're like, well, if you
exercise a little bit more, you know, and lost some weight,
I bet you'd feel better. It leaves people feeling hopeless, right,
(14:07):
And so what I try to do through my work
on social media and the work through auto I mean strong,
is to let people know, to educate them. It's not
that you're not trying hard enough, right, So I try
to help people have these light bulb moments being like, oh,
it's not that I'm doing something wrong. It's that what
I'm doing isn't the right fit for my body, and
(14:30):
I just need to try something different. And we actually
find that. Then they go home and they talk to
their spouses and their kids and their friends about like, oh,
I'm learning that my autoimmune disease has a side effect,
and that side effect is exercise intolerance. And then the
family is able to say, okay, well, maybe maybe we're
(14:50):
doing too much right now, maybe we need to help
you have more rest days. And it actually there's a
cascade where then people around you can start to participate
in helping you protect your health, you know. And then
you talk to your friends and they're like, oh wait,
that's a real thing.
Speaker 1 (15:06):
I have that too.
Speaker 2 (15:07):
I've been experiencing that too. So you know, the more
we can educate, the more we can have light bulb moments,
and the better we can feel.
Speaker 1 (15:14):
You mentioned that your husband has psoriasis. Do you coach him?
Speaker 2 (15:19):
Oh, that's a tricky question, IVET Yes, I do. I
mean he's learned a lot from watching me, and I
will say to him, like, you know, you're burning the
candle at both ends right now, Like what can I
do to support you? How do we reduce your load? Like?
You know, he wasn't. I go to the doctor a lot,
(15:40):
but he didn't, and so I was the one that
saw it, and I was like, I think you better
go see somebody. You know, it's useful to have people
around you watching out and saying, hey, that doesn't look right.
Speaker 1 (15:53):
Andrea, thank you so much for sharing your story of
how you have managed to advocate for yourself and help
other people to train for the marathon of life. We
are going to come back here in just a moment
and we are going to zoom in on the immune
system and autoimmune disease. Through the lens of history, we
have learned a lot about how these conditions happen, but
(16:14):
you might be shocked at how recently. We'll be right back.
(16:35):
We know here on our skin that autoimmune disorders are
chronic disorders. But if you ask any old, average Joe
on the street to name some common chronic illnesses, they
might think of heart disease or diabetes. But autoimmune diseases
are the third most common cause of chronic illness in
the United States, and they are becoming more and more prevalent.
(16:56):
According to the National Institutes of Health, autoimmune diseases affect
somewhere between five and eight percent of the US population.
That's around twenty three point five million people, although some
estimates suggest that number could be even higher, possibly as
high actually as ten percent of the population. So to
put that in perspective, we're talking about as many as
(17:18):
thirty three million people dealing with these kinds of conditions.
And one of the more common autoimmune diseases is psoriasis,
affecting about three percent of the US population. That means
that's about eight million people. It's just one of more
than one hundred different types of autoimmune diseases, which include
conditions like Andrea has talked about today, including rheumatoid arthritis,
(17:41):
also multiple sclerosis, scleroderma, lupus, and thyroid disease. And each
of these diseases is unique, but they all share a
common feature, which is that the body's immune system mistakenly
attacks its own cells. So, Andrea, it is super easy
to say autoimmune diseases as though it's some obvious category,
(18:03):
but there are so many ways that autoimmune dysfunction manifests, right.
Speaker 2 (18:08):
Oh, absolutely, it's a.
Speaker 1 (18:10):
Little bit nuts that one mechanism can not only cause
all of these different diseases, but two people with the
same disease may exhibit it in completely different ways. I'm
sure you see that all the.
Speaker 2 (18:21):
Time, all the time, all the time, and so it's
very hard to even know whether or not to see
the doctor about it because sometimes it feels like normal symptoms,
like oh, I'm just tired all the time because life
is busy. But these symptoms can be very hard. We
talk about a lot in our house, like am I sick?
Or is it a flair?
Speaker 1 (18:40):
Right? It can be hard to tell, and it's been
hard historically and statistically, women actually make up about eighty
percent of the people with autoimmune conditions. That is a
staggering number. So it brings up the question why are
women so much more affected by autoimmune disease than men?
And today we're going to explore this bience behind this
(19:01):
disparity and try to understand why these diagnoses seem to
disproportionately affect women. But before we get into why, I
want to take a little historical detour and talk about
some of the key figures who have shaped our understanding
of autoimmune disease. So we're going to start with Paul Erlick.
Erlick was a German physician and scientist who worked in
the late nineteenth and early twentieth centuries. He's actually the
(19:24):
person who coined the term autoimmunity and proposed that the
immune system might sometimes fail to differentiate between the self
and the non self, leading to what he called horror autotoxicus,
which is the horror of self toxicity. In other words,
the immune system attacking the body's own tissues and also
(19:45):
potentially a great metal band name.
Speaker 2 (19:47):
I love that name. I feel like it represents what
we deal with very accurately one hundred percent.
Speaker 1 (19:53):
In eighteen ninety seven, Erlick proposed what he initially called
the side chain model of immunity, to account for his
experimental observations, so he imagined that toxins or bacteria could sometimes,
for lack of a better word, trick our body cells,
which are set up with receptors to absorb nutrients out
of the bloodstream, and during an infection, these receptors would
(20:17):
confuse microbial toxins with nutrients and thus get infected and
stop working properly. So to compensate, the cell would produce
more receptors to try to get the nutrients they need
as other receptors malfunction. Then these excess receptors would then
shed into the bloodstream once the infection cleared up, and
there they would accumulate and act as antitoxins or antibodies,
(20:40):
protecting against subsequent exposures to the same infection. So this
was Erlik's theory, and it turned out to be not
quite right. So right now we know that there is
a special cell called a plasma cell that is dedicated
to producing antibodies. Erlk of course thought that all cells
had this function in some way. But despite of shortcomings,
(21:01):
Erlick's side chain model was really really groundbreaking, and it
actually paid the way for the subsequent correct description of
antibody formation, and it introduced the lock and key concept
that became the basis of our understanding of adaptive immunity.
Another key figure in the history of autoimmune disease research
is William Damashek. Doctor. Damashek was named Zev at his
(21:24):
birth in Varnaj, Russia, and then at the age of three,
he was brought to the United States by his parents.
They settled in Medford, Massachusetts, and at that point they
renamed him William in nineteen oh three to more easily
adapt to his new home country. And then Damashek expanded
on the ideas that Erlik had set forth, proposing that
autoimmune disease Erlick's horror autotoxicus result from the immune system's
(21:46):
failure to recognize self tissues, leading to disorders like aplastic
anemia and other conditions. And in the mid twentieth century
he proposed that many autoimmune diseases might be linked to
the body producing anti bodies against its own cells. That
is a theory that has been supported by so much
research since then. So he's the one that really drilled
(22:08):
down and figured out the mechanics of how these disorders work.
One of The very first to apply Erlis and Damashek's
findings to dermatology was E. J. Van Scott, a contemporary
of Damashek's who was working in the US in the
mid fifties and man. Scott published significant findings on the
role of keratinocytes, the primary cells in the outer layer
(22:29):
of the skin, in the pathogenesis of psoriasis. He demonstrated
that abnormal overproduction of these cells contributed to that characteristic
scaling and inflammation that is seen in the disease, and
then by nineteen fifty seven he had introduced research proving
psoriasis was not really a skin condition, but an autoimmune
disorder that the body attacking skin cells once again, our
(22:53):
good friend horror autotoxicus caused abnormal skin cell turnover. In
nineteen fifty seven he suggested using methotrex eight and immunosuppressant
to treat psoriasis, which marked a significant advance in treating
the cause of psoriasis, not just the symptoms, and so
he truly really laid the groundwork for some of the
most modern treatments that we currently have for psoriasis, including biologics,
(23:17):
which we're going to get into a whole lot in
the next episode. So Andrea, the first biologic came to
the market in nineteen ninety eight, meaning that we got
to that development from this most basic understanding of the
roots of psoriasis in about forty years. And that seems
like why did it take so long? But that is
actually a very big leap in a very short time,
(23:40):
because if you consider there was basically no improvement on
the treatment of psoriasis from like four hundred BCE until
the fifties, because people knew it existed, they didn't really
know what it was. You have probably in your time
working seen some of these advancements that have happened very
rapidly in the last decade or so.
Speaker 2 (24:01):
Oh one hundred percent the amount of knowledge that people
are coming in with. Now, a lot of people are
getting diagnoses because they're reading about their problems, and then
they're able to go to the doctor and say I
think I have They're able to communicate so much better
with their doctor, but also their doctor's knowledge is so
much farther along. Right, there's so much more medical knowledge,
(24:23):
and then also so much more knowledge from a patient's
side as well.
Speaker 1 (24:27):
As we talk about history and the science of autoimmune diseases.
It is important to remember these conditions have been around
for a very long time, but our understanding of them
really is still very new. We have watched it played
out in Andrea's story as something that is kind of
growing along with her since her diagnosis. It's almost like
genewis right there at the NeXT's point of the beginning
(24:50):
of all of us learning a lot more, and in fact,
the prevalence of autoimmune diseases might be increasing. A study
published in April twenty twenty in Our Critis in Rheumatology
found that the prevalence of anti nuclear antibodies, or ANA,
which are a common biomarker for autoimmunity, is significantly increasing
in the United States. So these researchers looked at data
(25:13):
spanning several decades and found that ANA prevalence increased from
eleven percent in the late nineteen eighties and early nineteen
nineties to eleven point five percent in the early two thousands,
and then made a big jump to fifteen point nine
percent by twenty eleven twenty twelve. These percentages correspond to
twenty two million people in the earlier period twenty seven
(25:36):
million people in the middle period. And then by the
time you get to that twenty eleven twenty twelve statistic,
a whopping forty one million people by their most recent estimates.
So what's particularly interesting here is that this wasn't uniform
across all groups. Right. The rise in ANA prevalence was
most notable among males, non Hispanic whites, and adults over
(25:58):
fifty and adolescent. And this suggests that a variety of
factors age, gender, ethnicity might be influencing the development of autoimmunity.
And it's a big deal that men are one of
those categories where we're seeing more autoimmune disease, and that
every researcher we've discussed here is male. As mentioned earlier,
(26:18):
we now see autoimmune diseases disproportionately affecting women. Some eighty
percent of patients are women. So I imagine do you
see this in your work? Is the majority of your
client base and the people that you work with women?
Speaker 2 (26:34):
Yes, we are ninety percent female in our membership, and
I think it's partly that there's a lot of women
who are diagnosed more women than men, but also a
lot of the men that I have spoken to are
not always as open to changeing It's very interesting. You know,
(26:58):
there's a kind of thought process us whereas I think
women are quicker to ask for help, so I am
over the last five years, I'm seeing that change and
we are having more men come to us. So I'm
excited by that because I think asking for help is
a good thing.
Speaker 1 (27:16):
Yes, I concur to go back to this disproportionately affecting
women issue. What's interesting is there's no single clearcut answer
to why that's the case, but modern researchers have identified
some factors that might be contributing to this disparity. So
one of the most significant factors, it's probably pretty easy
to guess because it's a hormonal difference issue. Estrogen, the
(27:39):
primary female sex hormone, is thought to play a role
in the immune system, and some studies suggest that estrogen
can enhance the immune response, which might make women more
susceptible to developing autoimmune diseases. On the flip side, this
could also explain why women generally have stronger immune responses
to infections when compared to men. And there's another factor,
(28:00):
which is genetic predisposition. So if a person has two
X chromosomes, they're considered female and if they have an
X and Y chromosomal combination, they're generally considered male. So
worth noting here as we're having this discussion, right, sex,
chromosomes and genetic expression can vary a whole lot, and
gender is really a completely different thing. But for the
(28:21):
sake of this discussion, since most of the research we
have looks at a binary man woman model, we're using
those terminologies here. So the X chromosome carries a significant
number of genes related to the immune system, and having
two X chromosomes might increase the likelihood of immune system malfunctions. However,
this also means that women might be better equipped to
(28:44):
handle certain infections, but also at the cost of this
higher risk of developing some sort of autoimmunity issue. There
is also a whole other role, which is environmental factors.
Women and men are exposed to different environmental stressors and
that can influence the development of autoimmune diseases. So, for instance,
certain chemicals and toxins in things that are stereotypically associated
(29:08):
with womanhood, like cosmetics and cleaning products and even food
packaging can trigger autoimmune responses.
Speaker 2 (29:14):
Are tampons, right, and.
Speaker 1 (29:17):
Women might be more exposed to these substances due to
societal norms and roles. So given the complexity and the
interplay of all of these factors and how much that
would completely shift from human to human, it is no
wonder that diagnosing autoimmune diseases can be so challenging. On average,
(29:38):
it takes about four and a half years and consultations
with four different physicians for a person to receive an
accurate diagnosis of an autoimmune condition.
Speaker 2 (29:48):
Isn't that a staggering number? I mean, that is it's unbelievable.
Speaker 1 (29:52):
It's such a long time to live with symptoms. You
are the classic story of this that you're like, no, no,
it's wrong, and they're like, mah, it's going to go away. No, no,
I swear to you it's wrong. So the same thing
if you're living with things like chronic pain and fatigue
or skin rashes and you don't know what's causing them,
four and a half years feels like an eternity forever.
(30:13):
Once a diagnosis is made, treatment usually focuses on reducing
immune system activity, so this could involve immunosuppressive drugs, corticosteroids,
or biologics medications that specifically target parts of the immune system,
and while these treatments can be effective for some people,
they are also not without risks. Suppressing the immune system
(30:34):
can mean that a person is more vulnerable to infections,
and long term use of some medications can lead to
other health issues. So as we wrap with today's episode,
I want to leave you with a thought. The story
of autoimmune disease is far from over. We are really
just beginning to understand the full scope of these conditions
and how they affect millions of people around the world.
(30:57):
And while today's episode focused on the history current state
of autoimmune disease research, our next episode is going to
take us into the future because we are going to
talk a lot about biologics, those cutting edge therapies that
are offering new hope to a lot of people with
autoimmune conditions. Andrea, like you are as I said, you're
kind of at the nexus of the beginning, both with
your diagnosis and now as you are helping people find
(31:21):
maybe some unexpected ways to manage their symptoms and their
diseases and even thrive. I'm so grateful that you came
to share your story with us today. It is very inspiring.
Speaker 2 (31:32):
Oh, I've enjoyed talking to you so much, Ali, It's
been so much fun, and that was such an educational
I love hearing the history in the way that you
framed it. It's really helpful to understand that it's not
just your own personal experience, but that it's a medical
problem that happens to millions of people.
Speaker 1 (31:49):
Right. I can't help but think of people like in
the Victorian era being told like, no, no, you're just
you're just a very fragile lady. Yes. I love that
you are so open about sharing your story, and you
also bring the spirit of all your client stories with
you too, and all that they've taught you. I think
the answer is definitely going to be yes. But do
(32:10):
you consider yourself a bit of a spokesperson for the
autoimmune disorder community?
Speaker 2 (32:15):
Oh? I mean I guess the answer is yes, because
I'm here behind a microphone speaking about it. So yes, Yes,
I think it's really important. The more conversations we can
have in the same way that you and I are
having them, and more people listen and then have their
own conversations, the more we can help everybody understand what
they're up against.
Speaker 1 (32:34):
And then, lastly, if you could just send one message
to listeners who might be grappling with their own diagnosis.
What would it be?
Speaker 2 (32:43):
You're not alone. Everybody who I've spoken to, all the thousands,
millions of people, everybody feels like they are in this
totally by themselves, and you're not speak up, tell people
what you need. You'll find that more people understand what
you're going through than you think, because it's an invisible
illness and we can't ever know what other people are
(33:04):
going through behind their own closed doors. So just know
that there are other people out there like you, and
that you don't have to go through it by yourself.
Speaker 1 (33:13):
Andrea, thank you again so much.
Speaker 2 (33:15):
Thank you for having me. It's been wonderful.
Speaker 1 (33:22):
Our Skim is hosted by myself, Holly Frye, and executive
produced and engineered by Ryan Martz. Our senior producer and
writer is Meredith Barnes. If you enjoy the show, share
it with your friends. You can also listen and follow
on the iHeartRadio app, Apple Podcasts, or wherever you get
your podcasts.
Welcome to Our Skin, a personal discovery podcast. I'm your host,
Holly Fry, and it is wonderful to have you here
with us. Connection is what this show is all about,
specifically connecting about things that we are sometimes afraid to
talk about. Today, we're going to be exploring the ups
and downs, past and present, personal and universal troubles we
(00:22):
have with our skin. Our skin is our most visible organ.
What happens on our skin affects the rest of our lives,
especially when dealing with a chronic condition. Getting diagnosed with
one of these, like psoriasis, can be overwhelming, but you're
not alone. Each episode features a personal story of resilience
and grace. But our personal stories are threads in a
(00:45):
larger tapestry, and there are lessons for us in the
history of how we treat our skin and the progress
we've made together. Caring for our skin is caring for ourselves.
Whether you're seeking inspiration for your own journey or curious
about the history of our skin, you'll find empathetic, transformative
conversations here on Our Skin. I am joined today by
(01:09):
the incredible Andrea wool And. Andrea is the founder of
Autoimmune Strong, an online hub and community for people who
want to find exercise that works with their body and
not against it. For people living with autoimmune disorders, exercise
can be such a double edged sword. Not enough can
result in stiffness, fatigue, and pain, while exercising in the
(01:32):
wrong way or too hard can also result in flare
ups and pain. Again, so it's very careful needle the thread.
And Andrea knows this Catch twenty two firsthand. Welcome Andrea.
What an absolute treat to get to spend time with
you and dive a little deeper and talk about all
things autoimmune. Thanks so much for having me, Andrea. We
(01:53):
talk a lot about psoriasis on this show, but I
do want to acknowledge that you personally don't have sarius.
Speaker 2 (02:01):
I do not. I do have multiple autoimmune conditions, and
many of my auto imune strong members have soriasis, so
we work a lot with people with psoriasis. My husband
and son also have it, but I personally don't. I
have a cocktail of many other things, and I hope
that to never add another piece to that puzzle. I
(02:21):
hope we can keep it the.
Speaker 1 (02:23):
Way it is.
Speaker 2 (02:24):
I do know a lot aboutsoriasis, and there are lots
of ways that exercise and psoriasis really partner. Well.
Speaker 1 (02:31):
I also want to talk a little bit more about
your story. You just mentioned you have multiple autoimmune conditions.
You also have fibromyalgia. Will you talk to me a
little bit about your diagnoses.
Speaker 2 (02:43):
Absolutely, I was diagnosed after the birth of my second son.
I've had health issues my whole life, and even as
a young kid, I was always in and out of doctors.
My family didn't really know what to do with me
because I always had something. I had a pink eye,
or a strep throat or of some kind of IRA.
I was always very susceptible. I had reconstructive ankle surgery
(03:05):
when I was twelve, and at the time, there wasn't
a lot of information about autoimmune disease, so they just
knew I had ligament laxity. They didn't know why what
was causing it. We now know that I have EDS,
and so we're now understanding that that is a chronic
(03:25):
illness issue and that that is what led to the
surgery that I had when I was twelve, But I
didn't learn that until I was almost forty. So it's
so interesting to learn things about your own diagnoses and
then look back on your health history and be like, oh,
that makes a lot of sense. So I had all
these chronic health issues when I was young, but nothing
(03:47):
really came to a head until after the birth of
my second son. I was able to get to the hospital,
but not able to get into delivery room. I gave
birth to him in the hallway, almost in the elevator,
and it was a very fast birthway I learned later
is that autoimmune diseases can be triggered by traumatic events.
And even though the birth of my son is certainly
(04:08):
not an emotional trauma, it is a physical trauma, especially
when it happens in that kind of way. And they're
all sorts of stories of women being diagnosed with autoimmune
disease after the birth of a child because it is
so traumatic for their body. So I had two children
at home, I had a newborn, I had a full
time job that I went back to after maternity leave,
(04:30):
and over the course of eight months or so, I
was a mess. My hair was falling out, I was
falling asleep everywhere, I was gaining weight instead of losing it.
Speaker 1 (04:40):
You know.
Speaker 2 (04:40):
There were just so many problems, and I went to
a whole bunch of doctors and they were like, well,
your postpartum. You just need to get through this postpartum
phase and you'll be fine. And my husband and I
are looking at each other going like, I'm not fine.
When am I going to be fine? I went to
a GI specialist and she was like, I don't really
know what's going on with you, but I will tell
(05:00):
you that a lot of people have had success by
going gluten free. I don't know what your diagnosis is,
but you can try that. After a month, I started
feeling better and I was like, Okay, this is something.
What's next? And within three months I was functional. It
was my gynecologist who said to me, it looks like
(05:21):
you have a swollen thyroid gland. You should go see
an anthrocinologist. I did and he You know, true to
form in the medical system, it's never smooth. You know.
The nurse calls me after I went through a whole
bunch of testing and the nurse called me and said, oh,
you're Hashimotos. Do you need up your dose or what
do you need? And I was like, wait, did what hashimotos?
Speaker 1 (05:43):
Like?
Speaker 2 (05:43):
Can you rewind? Thank goodness for Google. I still do
this to this day. I take the blood test that
come back, I google it, what does this mean? So
hashimotos diagnosis came next. Eventually I was then diagnosed with
celiac disease, and then I was diagnosed later, like many
years later, with EDS, and there's suspicion that there's maybe lupis,
(06:05):
but they can't really tell me for sure yet, and
there's a lot of question marks. But at the end
of the day, I am able to work with my
doctors and they get surprised. They're like, I don't know
what magic this is happening because I'm not on medication
for my hashimotos. I don't say that everybody is able
(06:25):
to get off their medications, but I was, and I've
been unmedicated for the last five years.
Speaker 1 (06:31):
For people that don't experience something like this where they
can eat kind of whatever they wish and it's not
going to lead them to having a horrible evening or
day or whatever, it's easy to think that there's wiggle
room where there isn't. But I'm really curious, was there
a moment where people that had maybe felt that way
in your life started to see the improvements that you
(06:53):
were having and that you were returning to yourself. Did
you see that light bulb moment where they were like,
I get it, now, I get it.
Speaker 2 (06:59):
Oh yes, Nobody in my life questions any of it.
They're like, this is what Andrea does because look at her.
I run my own business, I am a full time mom.
I'm an athlete again.
Speaker 1 (07:10):
You know.
Speaker 2 (07:10):
I am able to travel, I'm able to go out
to dinner and still have energy the next day. I
live the life that I want. And everybody around me
has seen that so much so that even back in
the day, people would see me at the supermarket and
they would whisper to me and they'd say, you look amazing.
What did you do because they had seen me the
(07:32):
year before where I look like I was dying. What
I've learned is that autoimmune disease is an invisible illness.
Nobody knows what you're hiding. Right. All they saw was
what I had been and then what I became. They
would say like, what happens? And I'm like, oh, well,
I was diagnosed with these autoimmune diseases and I was
able to turn my life around in this kind of way.
And they're like, oh my gosh, tell me how, because
(07:55):
I have. And then they'd share their story with me.
I have X, I'm desperate what do I do? And
that actually led me to after I had gone back
to school, I opened up a health coaching clinic and
within a month I had a wait list of like
three to four months. And that's actually how otto I
mean strong was born was because I was teaching nutrition
(08:16):
and fitness and I was like, well, nutrition is hard
to do online, but I can put up some exercise
videos and the people who are waiting to work with
me can like start exercising at home. And those exercise
videos became so popular that it just took off from there,
and I think a lot of people were really desperate
for that healing, and my healing was palpable to the
(08:37):
people who hardly knew me, which shows you how how
bad it was and how good it became.
Speaker 1 (08:43):
I want to talk too, about your own journey in
that regard of self education, because once you had this
diagnosis and you know that this is an explanation for
what's been going on in your life and that it's
something that you're going to have to deal with going forward,
what were the things that you immediately thought about? It
(09:05):
was this something you knew about? Did you understand the
idea of autoimmune diseases before you realized that you had one.
Speaker 2 (09:13):
You know, the word autoimmune. I had never heard it before.
I never heard gluten before. I never heard hashimotives before.
I think nowadays, with social media, there's a lot more awareness,
but back then there was nothing. So I would go
home and google what are healthy foods?
Speaker 1 (09:29):
Right?
Speaker 2 (09:29):
You know, I didn't even know because I had been
taught that healthy foods were, you know, low fat packaged
food items. And so now fast forward twelve years, I'm like,
my food is delicious. Not only is it nutritious, but
I love what I eat. It is so much yamier
(09:49):
than the diet than I had prior. So that's the
food piece. And then the exercise piece. I had known that.
I realized that the exercise I was doing wasn't really
working for me, but I didn't really know what exercise
was going to work for me. So I decided to
become a personal trainer. What I learned there is that
(10:10):
you don't learn anything about chronic illness as a personal trainer. Nothing.
You spend about half a module on special populations, which
is what do you do when a client has like
heart disease or heart failure, and that's pretty much it.
You don't learn anything about how to treat someone with
(10:31):
autoimmune disease. And so I was like, Okay, well this
isn't very helpful. So that's when I started. I spent
like a year and a half putting together the science
on exercise and autoimmune disease because I wasn't worried about
helping other people at this moment. I was literally just
trying to develop a course of action for myself, and
(10:51):
so I was my own guinea pig, and I was
you did a lot of trial and error. There were
a lot of things I did wrong. And then as
I got these clients, I was open with them. I
was like, I'm still learning, We're going to try things.
And then once I put the videos up online, now
we have like thousands of people all across the globe
using these exercise videos and giving us feedback. So we
(11:13):
are really learning this works, well, this doesn't work. This
is what works, you know for someone with rheumatoriy arthritis,
but maybe it doesn't work so well for somebody with
something else. So you know, we're constantly learning and getting
feedback from everybody. Because everybody is a little bit different.
Speaker 1 (11:29):
I want to talk a little bit more about autoimmune strong.
Do you see people that come in that are trying
to help manage their psoriasis and including movement in it
and what is that like?
Speaker 2 (11:41):
Yeah, because what a lot of people have figured out
through their personal experience is that their psoriasis gets worse
when they exercise. But also, you're supposed to exercise for
your health, So how do you exercise for your health
but also not trigger us viais flair because that's super uncomfortable. Ultimately,
(12:03):
here's the link. Sooriasis is triggered by stress. Exercise is
stress on the body. That's how exercise works. And the
way I explain it is that all humans autoimmune ssoriasis
are not They have a baseline of stress tolerance.
Speaker 1 (12:21):
Right.
Speaker 2 (12:22):
Think of a glass of water. You have an empty glass.
That empty glass is your ability to handle stress. Then
you get a diagnosis of siasis or an autoimmune disease.
You have to fill up that glass with a little
bit of water, like add an inch. Now you have
less room for stress. You have water in there that
(12:42):
represents the stress. Because even when you're sleeping, your body
is fighting a chronic illness. Then you add in your
commute to work. Then you add in the it's super
hot out and your body is stressed. You add in
all the things that humans have to deal with, and
we have less stress tolerance then people without chronic disease,
(13:03):
crisis or autoimmune So you have to find that happy medium.
I call it the GOLDILCS principle that like sweet spot,
you can't exercise too little, but you can't exercise too much,
And that sweet spot is something that really only you
can determine. But I have lots of tools to help
you figure out what that is.
Speaker 1 (13:22):
Sort of a tool that happens as a result of
autoimmune strong is that there is a huge community aspect
of it. Will you tell me what it's like When
people join the Facebook group or they start following you
on Instagram, even if they're not looking for a trainer,
there seems to be this really really active community of
support and information sharing.
Speaker 2 (13:43):
Well, look, the reality is is that we've all been
to the doctor and the doctor tells us that we
need to exercise and lose weight, right Like, that's a
very common It is a very common You go in
here for your appointment for fifteen minutes you're like, I
have all these problems, and they're like, well, if you
exercise a little bit more, you know, and lost some weight,
I bet you'd feel better. It leaves people feeling hopeless, right,
(14:07):
And so what I try to do through my work
on social media and the work through auto I mean strong,
is to let people know, to educate them. It's not
that you're not trying hard enough, right, So I try
to help people have these light bulb moments being like, oh,
it's not that I'm doing something wrong. It's that what
I'm doing isn't the right fit for my body, and
(14:30):
I just need to try something different. And we actually
find that. Then they go home and they talk to
their spouses and their kids and their friends about like, oh,
I'm learning that my autoimmune disease has a side effect,
and that side effect is exercise intolerance. And then the
family is able to say, okay, well, maybe maybe we're
(14:50):
doing too much right now, maybe we need to help
you have more rest days. And it actually there's a
cascade where then people around you can start to participate
in helping you protect your health, you know. And then
you talk to your friends and they're like, oh wait,
that's a real thing.
Speaker 1 (15:06):
I have that too.
Speaker 2 (15:07):
I've been experiencing that too. So you know, the more
we can educate, the more we can have light bulb moments,
and the better we can feel.
Speaker 1 (15:14):
You mentioned that your husband has psoriasis. Do you coach him?
Speaker 2 (15:19):
Oh, that's a tricky question, IVET Yes, I do. I
mean he's learned a lot from watching me, and I
will say to him, like, you know, you're burning the
candle at both ends right now, Like what can I
do to support you? How do we reduce your load? Like?
You know, he wasn't. I go to the doctor a lot,
(15:40):
but he didn't, and so I was the one that
saw it, and I was like, I think you better
go see somebody. You know, it's useful to have people
around you watching out and saying, hey, that doesn't look right.
Speaker 1 (15:53):
Andrea, thank you so much for sharing your story of
how you have managed to advocate for yourself and help
other people to train for the marathon of life. We
are going to come back here in just a moment
and we are going to zoom in on the immune
system and autoimmune disease. Through the lens of history, we
have learned a lot about how these conditions happen, but
(16:14):
you might be shocked at how recently. We'll be right back.
(16:35):
We know here on our skin that autoimmune disorders are
chronic disorders. But if you ask any old, average Joe
on the street to name some common chronic illnesses, they
might think of heart disease or diabetes. But autoimmune diseases
are the third most common cause of chronic illness in
the United States, and they are becoming more and more prevalent.
(16:56):
According to the National Institutes of Health, autoimmune diseases affect
somewhere between five and eight percent of the US population.
That's around twenty three point five million people, although some
estimates suggest that number could be even higher, possibly as
high actually as ten percent of the population. So to
put that in perspective, we're talking about as many as
(17:18):
thirty three million people dealing with these kinds of conditions.
And one of the more common autoimmune diseases is psoriasis,
affecting about three percent of the US population. That means
that's about eight million people. It's just one of more
than one hundred different types of autoimmune diseases, which include
conditions like Andrea has talked about today, including rheumatoid arthritis,
(17:41):
also multiple sclerosis, scleroderma, lupus, and thyroid disease. And each
of these diseases is unique, but they all share a
common feature, which is that the body's immune system mistakenly
attacks its own cells. So, Andrea, it is super easy
to say autoimmune diseases as though it's some obvious category,
(18:03):
but there are so many ways that autoimmune dysfunction manifests, right.
Speaker 2 (18:08):
Oh, absolutely, it's a.
Speaker 1 (18:10):
Little bit nuts that one mechanism can not only cause
all of these different diseases, but two people with the
same disease may exhibit it in completely different ways. I'm
sure you see that all the.
Speaker 2 (18:21):
Time, all the time, all the time, and so it's
very hard to even know whether or not to see
the doctor about it because sometimes it feels like normal symptoms,
like oh, I'm just tired all the time because life
is busy. But these symptoms can be very hard. We
talk about a lot in our house, like am I sick?
Or is it a flair?
Speaker 1 (18:40):
Right? It can be hard to tell, and it's been
hard historically and statistically, women actually make up about eighty
percent of the people with autoimmune conditions. That is a
staggering number. So it brings up the question why are
women so much more affected by autoimmune disease than men?
And today we're going to explore this bience behind this
(19:01):
disparity and try to understand why these diagnoses seem to
disproportionately affect women. But before we get into why, I
want to take a little historical detour and talk about
some of the key figures who have shaped our understanding
of autoimmune disease. So we're going to start with Paul Erlick.
Erlick was a German physician and scientist who worked in
the late nineteenth and early twentieth centuries. He's actually the
(19:24):
person who coined the term autoimmunity and proposed that the
immune system might sometimes fail to differentiate between the self
and the non self, leading to what he called horror autotoxicus,
which is the horror of self toxicity. In other words,
the immune system attacking the body's own tissues and also
(19:45):
potentially a great metal band name.
Speaker 2 (19:47):
I love that name. I feel like it represents what
we deal with very accurately one hundred percent.
Speaker 1 (19:53):
In eighteen ninety seven, Erlick proposed what he initially called
the side chain model of immunity, to account for his
experimental observations, so he imagined that toxins or bacteria could sometimes,
for lack of a better word, trick our body cells,
which are set up with receptors to absorb nutrients out
of the bloodstream, and during an infection, these receptors would
(20:17):
confuse microbial toxins with nutrients and thus get infected and
stop working properly. So to compensate, the cell would produce
more receptors to try to get the nutrients they need
as other receptors malfunction. Then these excess receptors would then
shed into the bloodstream once the infection cleared up, and
there they would accumulate and act as antitoxins or antibodies,
(20:40):
protecting against subsequent exposures to the same infection. So this
was Erlik's theory, and it turned out to be not
quite right. So right now we know that there is
a special cell called a plasma cell that is dedicated
to producing antibodies. Erlk of course thought that all cells
had this function in some way. But despite of shortcomings,
(21:01):
Erlick's side chain model was really really groundbreaking, and it
actually paid the way for the subsequent correct description of
antibody formation, and it introduced the lock and key concept
that became the basis of our understanding of adaptive immunity.
Another key figure in the history of autoimmune disease research
is William Damashek. Doctor. Damashek was named Zev at his
(21:24):
birth in Varnaj, Russia, and then at the age of three,
he was brought to the United States by his parents.
They settled in Medford, Massachusetts, and at that point they
renamed him William in nineteen oh three to more easily
adapt to his new home country. And then Damashek expanded
on the ideas that Erlik had set forth, proposing that
autoimmune disease Erlick's horror autotoxicus result from the immune system's
(21:46):
failure to recognize self tissues, leading to disorders like aplastic
anemia and other conditions. And in the mid twentieth century
he proposed that many autoimmune diseases might be linked to
the body producing anti bodies against its own cells. That
is a theory that has been supported by so much
research since then. So he's the one that really drilled
(22:08):
down and figured out the mechanics of how these disorders work.
One of The very first to apply Erlis and Damashek's
findings to dermatology was E. J. Van Scott, a contemporary
of Damashek's who was working in the US in the
mid fifties and man. Scott published significant findings on the
role of keratinocytes, the primary cells in the outer layer
(22:29):
of the skin, in the pathogenesis of psoriasis. He demonstrated
that abnormal overproduction of these cells contributed to that characteristic
scaling and inflammation that is seen in the disease, and
then by nineteen fifty seven he had introduced research proving
psoriasis was not really a skin condition, but an autoimmune
disorder that the body attacking skin cells once again, our
(22:53):
good friend horror autotoxicus caused abnormal skin cell turnover. In
nineteen fifty seven he suggested using methotrex eight and immunosuppressant
to treat psoriasis, which marked a significant advance in treating
the cause of psoriasis, not just the symptoms, and so
he truly really laid the groundwork for some of the
most modern treatments that we currently have for psoriasis, including biologics,
(23:17):
which we're going to get into a whole lot in
the next episode. So Andrea, the first biologic came to
the market in nineteen ninety eight, meaning that we got
to that development from this most basic understanding of the
roots of psoriasis in about forty years. And that seems
like why did it take so long? But that is
actually a very big leap in a very short time,
(23:40):
because if you consider there was basically no improvement on
the treatment of psoriasis from like four hundred BCE until
the fifties, because people knew it existed, they didn't really
know what it was. You have probably in your time
working seen some of these advancements that have happened very
rapidly in the last decade or so.
Speaker 2 (24:01):
Oh one hundred percent the amount of knowledge that people
are coming in with. Now, a lot of people are
getting diagnoses because they're reading about their problems, and then
they're able to go to the doctor and say I
think I have They're able to communicate so much better
with their doctor, but also their doctor's knowledge is so
much farther along. Right, there's so much more medical knowledge,
(24:23):
and then also so much more knowledge from a patient's
side as well.
Speaker 1 (24:27):
As we talk about history and the science of autoimmune diseases.
It is important to remember these conditions have been around
for a very long time, but our understanding of them
really is still very new. We have watched it played
out in Andrea's story as something that is kind of
growing along with her since her diagnosis. It's almost like
genewis right there at the NeXT's point of the beginning
(24:50):
of all of us learning a lot more, and in fact,
the prevalence of autoimmune diseases might be increasing. A study
published in April twenty twenty in Our Critis in Rheumatology
found that the prevalence of anti nuclear antibodies, or ANA,
which are a common biomarker for autoimmunity, is significantly increasing
in the United States. So these researchers looked at data
(25:13):
spanning several decades and found that ANA prevalence increased from
eleven percent in the late nineteen eighties and early nineteen
nineties to eleven point five percent in the early two thousands,
and then made a big jump to fifteen point nine
percent by twenty eleven twenty twelve. These percentages correspond to
twenty two million people in the earlier period twenty seven
(25:36):
million people in the middle period. And then by the
time you get to that twenty eleven twenty twelve statistic,
a whopping forty one million people by their most recent estimates.
So what's particularly interesting here is that this wasn't uniform
across all groups. Right. The rise in ANA prevalence was
most notable among males, non Hispanic whites, and adults over
(25:58):
fifty and adolescent. And this suggests that a variety of
factors age, gender, ethnicity might be influencing the development of autoimmunity.
And it's a big deal that men are one of
those categories where we're seeing more autoimmune disease, and that
every researcher we've discussed here is male. As mentioned earlier,
(26:18):
we now see autoimmune diseases disproportionately affecting women. Some eighty
percent of patients are women. So I imagine do you
see this in your work? Is the majority of your
client base and the people that you work with women?
Speaker 2 (26:34):
Yes, we are ninety percent female in our membership, and
I think it's partly that there's a lot of women
who are diagnosed more women than men, but also a
lot of the men that I have spoken to are
not always as open to changeing It's very interesting. You know,
(26:58):
there's a kind of thought process us whereas I think
women are quicker to ask for help, so I am
over the last five years, I'm seeing that change and
we are having more men come to us. So I'm
excited by that because I think asking for help is
a good thing.
Speaker 1 (27:16):
Yes, I concur to go back to this disproportionately affecting
women issue. What's interesting is there's no single clearcut answer
to why that's the case, but modern researchers have identified
some factors that might be contributing to this disparity. So
one of the most significant factors, it's probably pretty easy
to guess because it's a hormonal difference issue. Estrogen, the
(27:39):
primary female sex hormone, is thought to play a role
in the immune system, and some studies suggest that estrogen
can enhance the immune response, which might make women more
susceptible to developing autoimmune diseases. On the flip side, this
could also explain why women generally have stronger immune responses
to infections when compared to men. And there's another factor,
(28:00):
which is genetic predisposition. So if a person has two
X chromosomes, they're considered female and if they have an
X and Y chromosomal combination, they're generally considered male. So
worth noting here as we're having this discussion, right, sex,
chromosomes and genetic expression can vary a whole lot, and
gender is really a completely different thing. But for the
(28:21):
sake of this discussion, since most of the research we
have looks at a binary man woman model, we're using
those terminologies here. So the X chromosome carries a significant
number of genes related to the immune system, and having
two X chromosomes might increase the likelihood of immune system malfunctions. However,
this also means that women might be better equipped to
(28:44):
handle certain infections, but also at the cost of this
higher risk of developing some sort of autoimmunity issue. There
is also a whole other role, which is environmental factors.
Women and men are exposed to different environmental stressors and
that can influence the development of autoimmune diseases. So, for instance,
certain chemicals and toxins in things that are stereotypically associated
(29:08):
with womanhood, like cosmetics and cleaning products and even food
packaging can trigger autoimmune responses.
Speaker 2 (29:14):
Are tampons, right, and.
Speaker 1 (29:17):
Women might be more exposed to these substances due to
societal norms and roles. So given the complexity and the
interplay of all of these factors and how much that
would completely shift from human to human, it is no
wonder that diagnosing autoimmune diseases can be so challenging. On average,
(29:38):
it takes about four and a half years and consultations
with four different physicians for a person to receive an
accurate diagnosis of an autoimmune condition.
Speaker 2 (29:48):
Isn't that a staggering number? I mean, that is it's unbelievable.
Speaker 1 (29:52):
It's such a long time to live with symptoms. You
are the classic story of this that you're like, no, no,
it's wrong, and they're like, mah, it's going to go away. No, no,
I swear to you it's wrong. So the same thing
if you're living with things like chronic pain and fatigue
or skin rashes and you don't know what's causing them,
four and a half years feels like an eternity forever.
(30:13):
Once a diagnosis is made, treatment usually focuses on reducing
immune system activity, so this could involve immunosuppressive drugs, corticosteroids,
or biologics medications that specifically target parts of the immune system,
and while these treatments can be effective for some people,
they are also not without risks. Suppressing the immune system
(30:34):
can mean that a person is more vulnerable to infections,
and long term use of some medications can lead to
other health issues. So as we wrap with today's episode,
I want to leave you with a thought. The story
of autoimmune disease is far from over. We are really
just beginning to understand the full scope of these conditions
and how they affect millions of people around the world.
(30:57):
And while today's episode focused on the history current state
of autoimmune disease research, our next episode is going to
take us into the future because we are going to
talk a lot about biologics, those cutting edge therapies that
are offering new hope to a lot of people with
autoimmune conditions. Andrea, like you are as I said, you're
kind of at the nexus of the beginning, both with
your diagnosis and now as you are helping people find
(31:21):
maybe some unexpected ways to manage their symptoms and their
diseases and even thrive. I'm so grateful that you came
to share your story with us today. It is very inspiring.
Speaker 2 (31:32):
Oh, I've enjoyed talking to you so much, Ali, It's
been so much fun, and that was such an educational
I love hearing the history in the way that you
framed it. It's really helpful to understand that it's not
just your own personal experience, but that it's a medical
problem that happens to millions of people.
Speaker 1 (31:49):
Right. I can't help but think of people like in
the Victorian era being told like, no, no, you're just
you're just a very fragile lady. Yes. I love that
you are so open about sharing your story, and you
also bring the spirit of all your client stories with
you too, and all that they've taught you. I think
the answer is definitely going to be yes. But do
(32:10):
you consider yourself a bit of a spokesperson for the
autoimmune disorder community?
Speaker 2 (32:15):
Oh? I mean I guess the answer is yes, because
I'm here behind a microphone speaking about it. So yes, Yes,
I think it's really important. The more conversations we can
have in the same way that you and I are
having them, and more people listen and then have their
own conversations, the more we can help everybody understand what
they're up against.
Speaker 1 (32:34):
And then, lastly, if you could just send one message
to listeners who might be grappling with their own diagnosis.
What would it be?
Speaker 2 (32:43):
You're not alone. Everybody who I've spoken to, all the thousands,
millions of people, everybody feels like they are in this
totally by themselves, and you're not speak up, tell people
what you need. You'll find that more people understand what
you're going through than you think, because it's an invisible
illness and we can't ever know what other people are
(33:04):
going through behind their own closed doors. So just know
that there are other people out there like you, and
that you don't have to go through it by yourself.
Speaker 1 (33:13):
Andrea, thank you again so much.
Speaker 2 (33:15):
Thank you for having me. It's been wonderful.
Speaker 1 (33:22):
Our Skim is hosted by myself, Holly Frye, and executive
produced and engineered by Ryan Martz. Our senior producer and
writer is Meredith Barnes. If you enjoy the show, share
it with your friends. You can also listen and follow
on the iHeartRadio app, Apple Podcasts, or wherever you get
your podcasts.
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