October 3, 2024 • 32 mins
After being diagnosed with psoriasis as a teen, Joni Kazantzis has tried just about every treatment one can to get comfortable in her skin. Her blog, Just a Girl with Spots, became a platform for Joni to shed light on the struggles, triumphs, and everything in between. Listen in as we explore her dedication to helping others find their path to treating their own chronic illness, and strength in the support of others who get it. In our history segment, learn about the development of one of the most modern–and effective–treatments for psoriasis: biologics!
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Episode Transcript
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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. So today we are sitting
(01:09):
down with yet another incredibly inspiring guest, Joni Kazantsis. Joni
is not just a Sriasis advocate. She is also the
voice behind the just a Girl with Spots blog, which
is a resource and community hub where she shares her
personal journey living with siriasis and provides a space for
others facing similar challenges to find connection and information about sriasis.
(01:33):
When Joni was just fifteen, she woke up covered in red,
scaly spots. Looking back, they came out of nowhere. There
wasn't any big stressor or event that caused this initial flare,
and like many she faced the physical pain and frustration
of managing flare ups. But what really weighed on her
was the emotional toll. She remembers covering up her skin
(01:57):
to avoid stairs and comments, but her friends and classmates
were largely accepting. It was actually the reactions of adults
that stick in her mind now, like a very rude
woman at the beach who once asked Joni if she
was contagious, as if being a teenager isn't tough enough.
After years of struggling and navigating a medical system that
(02:19):
didn't always have clear answers, Jonie decided to take control
of her own narrative. She began writing Just a Girl
with Spots in twenty twelve as a way to share
her story, thinking she might reach a few people who
were going through similar experiences. That site has become a
hub of honest, raw and often humorist reflections on the
(02:40):
realities of living with psoriasis, everything from dealing with flare
ups in public to the anxiety of trying new treatments.
And this community became even more vital when Joni was
diagnosed with soriatic arthritis in twenty twenty at thirty eight
years old. Today, I am very pleased to say that
Joni joins us to share more about her journey, her advocacy,
(03:02):
and how just a girl with spots is helping others
feel less alone. So, Joni, thank you so much for
being here with us.
Speaker 2 (03:09):
Hello, how are you? I'm so excited to be here
and really appreciate the opportunity to come on and tell
my story and a little bit about the experiences that
I've had growing up with psoriasis and then being later
diagnosed with soriatic arthritis.
Speaker 1 (03:24):
I want you to take me back to what it
was like being fifteen and waking up covered in spots.
This seems like the teenager's nightmare. So what was that morning, Like,
how did your family react, what did you do? Tell
us how the whole thing played out?
Speaker 2 (03:39):
I panicked. It felt like I had a million bug
bites on top of a bad sunburn. I always had
a lot of allergies growing up, so my family thought
it was something I ate, or potentially that I came
into contact with outside at a soccer game the day before.
My grandmother actually lived with us, and she had a
mild case of psoriasis, but based on how severe it was,
(04:01):
even she thought it was allergies because she had never
had more than a few spots on her arm at
a time. I first saw my pediatrician because I was
so young, and they recommended a dermatologist. My dermatologist who
I was able to get into pretty quickly officially diagnosed
me with guttade and plaxiasis on my first visit. But
I was a fifteen year old girl. I was already
(04:22):
self conscious about my appearance, so this honestly felt like
the worst possible thing that could ever be happening to me.
Speaker 1 (04:29):
I imagine it feels like you went to sleep in one
body and woke up in another, Like how did you
even reconcile your identity? With yourself at that point.
Speaker 2 (04:39):
It's a tough age to begin with it. Yeah, there's
so much going on in your mind that is about yourself.
You're very much focused on what other people think of you,
and now to be covered in these red spots, my
first inclination was just to hide and isolate myself. It
(05:00):
was just really hard to understand for me that this
was a chronic disease. I thought I had no experience
with it, that I would go to the doctor, he
would give me a pill or a prescription and I
would put it on and it would go away. He
started talking to my mom and me that you know,
if this doesn't work, we have Plan B, and if
that doesn't work, we have Plan C, and so on
(05:21):
and so on and so on. And it was really
challenging for me to understand that this was going to
be something that I would have to live with for
my entire life. And because I was so young, they
didn't really want to be very aggressive with the treatment,
so steroids wasn't an option. Biologics at that age wasn't
an option for me. So it was a lot of creams.
(05:43):
It was light therapy treatment and things that I could
do from a lifestyle perspective.
Speaker 1 (05:49):
You have this somewhat unique experience in that you got
a whole new diagnosis much later in life to compare
and contrast with what it was like as a teen.
I'm curious how it felt to get that new diagnosis
at that point. You were thirty eight, you were a mom,
you had young kids, and then you're diagnosed to asiatic arthritis.
(06:09):
What was that like and did you think about it
at the time as a different experience from when you
were fifteen.
Speaker 2 (06:15):
I definitely felt more control because I always knew that
it was a possibility that I could develop soiatic arthritis,
so I knew a lot about it. When I was
first diagnosed with psoriasis, I knew nothing about it. I
didn't even I hated the word. I didn't even like
to say the word. And it was pre Google. You
couldn't just look it up and find out anything about it.
(06:36):
I got pamphlets at the doctor's office, and I couldn't
pronounce half of the words in those pamphlets. So I
knew a lot more about it, and I felt more informed,
and I could find out information and different things that
I could do to be more proactive with it. But
there was still that panic attached to it, because there
was a lot more determination to get the right treatment
(06:57):
right away so that I could maintain lifestyle. I'm really
hands on with the girls. I've led both of their
Girl Scout troops, I coach lacrosse. I'm on the ground
with them on the gym floor, making signs and decorations
for cheer competitions, and those were the things that I
really wanted to make sure that I could still do.
I love to exercise, I lift weights four times a week,
I'm running, I'm going on bike rides, So being able
(07:21):
to maintain mobility was just critical for me. So there's
just days when I need to push through it. But
I also think it's important for the girls to see
me taking care of my body and myself, So there
was more of a balance. But I definitely felt more
in control with this diagnosis. I don't want it. Not
a club that I want to be part of, but
something that I felt I was more capable of managing
(07:45):
at this age.
Speaker 1 (07:46):
Will you talk a little bit for our audience about
psoriasis versus soriatic arthritis. They're often related, but they are
not the same thing. So will you walk us through it.
Speaker 2 (07:55):
Yeah, So both are autoimmune diseases, So essentially your immune
system is attacking your own body and that's causing inflammation
in your body. Pyiasis symptoms appear on the skin with
thick scaly patches, and then soriatic arthritis really affects the joints.
I get the arthritis in my hands and my toes,
which makes some days a little bit slower than others
(08:17):
and a little bit harder to do. But there's always
ways I find that I can kind of cheat a
little bit, and I find ways to adapt. You can
have psoriasis and never develop soriatic arthritis. You can also
have zordiatgarthritis and not have psoriasis. So there's really a
lot of aspects to it that are still a mystery.
There's no real way to know if you get diagnosed
(08:39):
with one, if later down the line you'll get diagnosed
with the other.
Speaker 1 (08:42):
I know you've talked about from your point of view,
knowing that you had more information at hand when you
were an adult and you knew how to attack the problem.
But from the opposite side, how were the journeys different
in dealing with doctors, getting your diagnosis, getting treatments, figures doubt.
Speaker 2 (09:01):
With my SERISIS diagnosis. I was a kid, so my
mom took me everywhere I went. She was really critical
in that treatment journey and was ultimately making those decisions.
I was always part of the conversation and we talked
about what would work and not work for me. But
she was very critical in research, again pre Google era,
(09:23):
so when she does research, she was taking herself to
the library and she was finding what else we could
be doing. So first it was a pediatrician and then
a dermatologist, and then treatment was really a challenge, I
think for us because of the age. Steroids was something
that my mom just didn't want me to be on,
especially being fifteen and in that space of growing up
(09:45):
and getting older, which honestly was really frustrated for me
because I just so desperately wanted to have clear skin,
and I didn't want to be patient and see if
things would work, and I wanted to be as aggressive
as possible. Thankfully, I did have a patient parent who
understood long term that that would be something that could
(10:07):
potentially have side effects. So it was a lot of
creams and ointments. They were very messy, very smelly, like
coal tar things. That stained things that just were not
pleasant to put on your skin, and I struggled mentally
understanding that a flair could last months or years, and
then wrapping my head around again that I would have
(10:27):
this disease for the rest of my life, where with
soriatic arthritis, I've already come to terms the fact that
I live with psoriasis is just part of my life now.
I grew up with it every major event in my
life so far. I've had psoriasis at my wedding, my graduations,
both of my kids being born, and so soriatic arthritis
(10:48):
was new for me, and especially being diagnosed in twenty
twenty when we all know what a great year that
was for everyone, So this just kind of felt like
a cherry on top of just a fantastic, fantasts a
year for everyone. I started to get spots coming back,
but also for the first time, I felt it in
my joints, and I knew right away what it was.
(11:10):
And so every doctor's appointment I have, he would ask
me any joint pain, any of this, and so this
was the first time that I was like, yep, I
have joint pain. My hands hurt in the morning, Like
what can we do, and how can we get something
new going right away?
Speaker 1 (11:27):
How long did it take to settle into kind of
a regimen that controlled things. We've heard from all of
our guests that controlling psoriasis flares is about both medical
treatment and lifestyle changes. Was that the case for you?
And how long did it really take to get to
a point where you felt like either yoursriasis or your
criatic arthritis were under control as much as they could be.
Speaker 2 (11:50):
It took a long time, I think, especially because of
the age and the less aggressive treatments, to find that
balance with medication and lifestyles. As time went on, I
started to understand what my triggers were. Stress I very
quickly realized was something that was a trigger for me.
My dermatile just was really knowledgeable about psoriasis. We talked
(12:11):
about lifestyle changes. It was smaller things. It was like
night shades could be a trigger, so you shouldn't neet those,
or sunlight is good for your psoriasis. I vividly remember
going home from that appointment after you said that, and
immediately got a towel and I went out to sunbathe.
I also learned that day that you still need to
wear sunscreen even though the sun is good for psoriasis,
(12:32):
because a sunburn is actually much much, much worse. So
lived experiences in what works and what doesn't work lifestyle
to me now, when I think about my treatment, lifestyle
is a part of that.
Speaker 1 (12:47):
Tell me about starting just a girl with spots and
then sharing what hadn't hadn't worked for you, What was
going on? What was it like to just start sharing
your entire journey so publicly?
Speaker 2 (13:00):
Scary? I mean really scary. When I was first diagnosed,
I wouldn't be in a picture, I wouldn't say the word.
And I came home from a doctor's appointment. I was
living in New York City at the time with my
boyfriend now husband. I was really frustrated because when I
first called, they said he had experience with psoriasis. I
(13:20):
walked in, I sat in the office and there was
a video playing of him on a TV show talking
about his anti aging regimen and how you can come
into his office and get like your hands treated for aging.
And I was like, well, this isn't really what I'm
here for. So I started the blog because I really
wanted to be the resource that I needed when I
(13:42):
was first diagnosed. There's so much to know about living
with psoriasis that you really only get to understand if
you're living with it. So this was firsthand experience. There's
a lot of child and error, and if you're being
diagnosed initially, it is so much of a mental overload
to try to retain all of that information in one
(14:02):
probably fifteen minute if you're lucky, doctor's appointment. So the
goal really is to be able to provide resources and
support to others who are living with psoriasis. There's like
lifestyle tips on there, learnings, advice, just personal experiences, funny
jokes about living with it. And it's really just because
I don't want anyone who's living with psoriasis to feel
(14:23):
alone in their journey, no matter if they're newly diagnosed
or been living with it for years.
Speaker 1 (14:29):
Clearly you have always had support through your family, but
can you talk a little bit about the importance of
building community to your experience and how much has reaching
out to connect with others who know what you're going
through changed your day to day probably as much as theirs.
Speaker 2 (14:48):
When I was growing up, I had a lot of support,
but I also felt emotionally isolated because of it. I
didn't really feel comfortable talking to anybody about it, and
I had a lot of trouble describing just how it
felt because people think, oh, it's just dry skin or
it's itchy, but it was so much more than that,
(15:08):
and I couldn't really put it into words about what
it was. So when I first started meeting others in
the crisis community, and that was actually thanks to my mom,
who found us a in person meeting of the Natural
Psoriasis Foundation, I met other people who actually had psoriasis.
It just felt like I had found this missing piece
of the puzzle. So there's just so much relief in
(15:29):
talking to people who just get it. They understand. I
didn't feel alone. There's people that you could just vent to.
They understand the struggles of medications, putting things on the stains,
the flakes. I didn't learn anything in eighth grade or
whatever grade. I was maybe ninth grade science because that
was the year I was diagnosed with psoriasis, and I
(15:51):
had patches in my hair and flakes everywhere, and the
desks in science class were black, and so I spent
the entire period it's just making sure that nothing would
fall on the desk. So I can't tell you anything.
I think it was Earth's science that year. I know
nothing about it, and that is solely because of my poriasis.
Speaker 1 (16:13):
Like I don't know what the mantle and the crust are.
I know other stuff going on.
Speaker 2 (16:17):
There were no faith, That's all I was concerned about.
Speaker 1 (16:20):
Joni, thank you so much for talking with me about
all of this and sharing more of your story. We
will have more questions for you to come, but after
this break, we're going to talk about what a difference
hundreds of years of history makes. Our look back at
the history of how we treat our skin and the
conditions that affect it has shown us throughout this season
that there were some really rough times for soriasis patients
(16:43):
of all stripes over the years. Injecting arsenic comes to mind,
super gross. But we are in a pretty exciting age
of new treatments for autoimmune conditions, and chief among them
is biologics. So we're going to talk more about that
right after the break. Welcome back to our Skin. We
(17:19):
have covered a lot of ground, so for some context
on just what a remarkable moment this is in the
treatment of priasis and other autoimmune conditions, let's review Briefly,
For centuries, piasis was simply considered a skin condition, something
that caused red, scaly patches on the skin. This is
something Joni referenced earlier. The first accurate clinical description of
(17:44):
psoriasis as we know was offered by doctor Robert Willin
in eighteen oh eight. Willin, often called the founder of dermatology,
was the first to distinguish psoriasis from other skin diseases,
although his understanding of its underlying causes was a little off,
and our understanding of it was going to take some time.
(18:04):
Fast forward to the nineteen fifties, when treatment with ultraviolet
light and cordico steroids began to emerge. These were significant breakthroughs,
but they were based on the idea, again that syriasis
was purely a problem of the skin. So, Joni, you
have written about thinking soriasis was just a skin thing,
and we talked about that a little earlier. When did
(18:26):
you learn that it was an autoimmune condition?
Speaker 2 (18:29):
I would have to say that it was probably like
at least five to ten years into my diagnosis that
I really understood. It's when I started doing my own
research on it.
Speaker 1 (18:40):
So in the two thousands, pretty recently, it actually wasn't
until nineteen sixty three that a pivotal shift occurred in
our understanding of soriasis and soiatic arthritis.
Speaker 2 (18:51):
EJ.
Speaker 1 (18:51):
Van Scott published a groundbreaking paper revealing that pyriasis was
not just a skin condition, but an autoimmune disorder disease
in which the immune system mistakenly attacks the body's own tissues,
and this realization had profound implications for treatment, opening the
door to therapies that targeted the immune system rather than
(19:13):
just the skin. Understanding psoriasis as an autoimmune disease is
a game changer, and it was then It meant that
treatments could now be developed to target the underlying immune
processes driving the disease, rather than just addressing the symptoms.
This shift in perspective paid the way for more effective
and targeted therapies, including the development of something I know
(19:36):
Joni knows a lot about, which is biologics. Before biologics,
the primary systemic treatments for psoriasis were small molecule drugs
like methatrexate. Introduced in the late nineteen forties as a
cancer treatment, metatrex eate became the first choice for treating
severe psoriasis by the nineteen seventies. While it was somewhat effective,
(19:56):
Metatrex eight came with significant risks, including more than ten
black box warnings from the FDA, some of which involved
the risk of death. So this obviously was far from ideal,
especially for a disease that, while chronic, is not typically
life threatening. Joni, did you have any experiences with your
treatments that had major side effects, maybe worse than the
(20:19):
psoriasis itself.
Speaker 2 (20:21):
I was on not a biologic, but an oral medication
that I was on for only a week because the
stomach issues were just it was not good.
Speaker 1 (20:31):
So now your skin hurts and your digestive system is
also a mess, just what everybody wants, hot mess. So
enter biologics. That's a class of drugs that represented a
seismic shift in the treatment of autoimmune diseases like psoriasis.
But what exactly are biologics and how do they differ
from the treatments that came before them. So, in very
(20:52):
simple terms, biologics are large, complex molecules that are derived
from living cells, unlike small molluc drugs, which are chemically
synthesized and can be taken orally biologics are typically proteins
that need to be injected because they would be broken
down in the digestive system if you take them orally.
This difference in how they're made and administered, though, is
(21:14):
just the beginning. Small molecule drugs like methatrex eight work
by broadly suppressing the immune system, and that can of
course lead to significant side effects and an increased risk
of all sorts of infections as the immune system's operation
is hampered. In contrast, biologics are designed to target specific
parts of the immune system. This targeted approach means they
(21:37):
can be more effective with fewer side effects, making them
a game changer in the treatment of autoimmune diseases. I imagine, though, Joni,
because biologics are so focused, sometimes you have to try
different ones to see which is going.
Speaker 2 (21:52):
To work exactly. I've been on a few throughout the years,
and there's some that you tried, they don't work right away,
you have to change within a few months. There's a
few that I've been on that I've been on for years.
Speaker 1 (22:05):
Bodies are fascinating. Now let's get into the nitty gritty
of biologics, specifically, the different types of biologic agents used
to treatsoriasis, so first up TNF alpha inhibitors. The approval
of the first TNF alpha inhibitor in two thousand and
three mark the beginning of the biologic era in syriasis treatment.
(22:26):
The first biologics to be approved for cyiasis targeted a
molecule called tumor necrosis factor alpha or TNF alpha, which
plays a key role in inflammation. By blocking TNF alpha,
these drugs can reduce the inflammation that drives psoriasis and
joint pain caused by soiatic arthritis. Next IL twelve and
(22:48):
twenty three inhibitors. As our understanding of cyiasis improved, so
did the specificity of biologics. The next generation of biologics
targeted interluke in twelve and interlace uk and twenty three
cytokines involved in the immune response. By inhibiting these molecules,
these biologics could more effectively reduce the symptoms of psoriasis,
(23:11):
and the next advance was IL seventeen inhibitors. Further research
revealed that INTERLUCN seventeen or IL seventeen plays a crucial
role in how psoriasis affects our skin and joints. How
those characteristic symptoms show up on and in our bodies.
Biologics targeting IL seventeen have proven to be highly effective
(23:32):
in achieving clear or almost clear skin, a significant advancement
in treatment, and then, most recently, we have IL twenty
three inhibitors. These biologics focus on the INTERLUCN twenty three molecule,
which is another key player in the immune response. These
drugs offer even more targeted treatment options, providing new hope
(23:52):
for patients who may not have responded to earlier therapies. However,
biologics do still have some side effect. Although their targeted
nature is definitely a step up from many of the
places where we've been, people still have to watch out
for things that you might imagine when your immune system
gets suppressed, like increased risk of infections. So obviously it
(24:14):
is very important to talk thoroughly with your doctor before
and during treatment so that adjustments can be made if needed. Joni,
could you do something of a compare and contrast for
what you have been doing in terms of tweaking and
having these conversations with your doctor and how they have
played out versus years ago when you were much younger
(24:34):
and having a pre biologic effort to try to control
your psoriasis.
Speaker 2 (24:39):
It's honestly made a world of a difference. The biologic
that I'm on I take every eight weeks, So every
eight weeks I take a shot at home. It takes
two minutes to get all the materials out and do
the shot. Well, when I was on topicals, you're applying
those twice a day, and I was covered from head
to toe, so it would take a very long time.
It would take up to a hour to put this
(25:01):
medication on. So it feels from a time perspective, and
just mentally, there was so much fatigue about doing that
all the time. And now I just have to I
put a reminder on the calendar and I take my
shot and I'm done.
Speaker 1 (25:17):
This seems like much much easier to integrate into your
day to day life.
Speaker 2 (25:21):
Absolutely, because it's it's not even day to day.
Speaker 1 (25:24):
For those of you listening, you may be wondering where
do we go from here? Clinically, and today we stand
at the forefront of the second breakthrough in systemic treatments
for psoriasis. With the development of biologics and with these
highly targeted and effective therapies, the goalposts have shifted now,
achieving a ninety percent or for some people, even a
(25:44):
one hundred percent reduction in symptoms is a realistic goal
in clinical trials. But the story does not end there.
The future of soriasi's treatment lies in further refining these therapies,
conducting head to head trials of different bio logics, and
continuing to improve patient outcomes. While newer biologics have set
(26:05):
the bar very high, it's important to remember that older
biologics still have their place. For example, one of the
earliest biologics approved by the FDA twenty years ago has
one of the best safety profiles for older patients, so
it remains a valid and valuable option. As we continue
to learn more about the immune system and refine these therapies,
(26:27):
the future looks very bright for patients with psoriasis, and
who knows, the next big breakthrough could be just around
the corner. Joni, and talking through all of this history,
the obvious point here is that we have come so
far already. I feel like you are the textbook case
of someone who has seen it all and tried it all,
and it sounds like you feel like you've come a
(26:49):
long way in terms of treating and managing your psoriasis.
Speaker 2 (26:52):
Absolutely, I think that not only physically with the medications
that I'm on, but mentally, I know how to manage it.
I understand that it's not just a physical disease, and
it's important to recognize that having the mental support and
the physical support, and that holistic treatment that includes a
(27:13):
biologic which also includes the lifestyle. So there's just so
much more that I know and have learned throughout my
journey with this that I want to keep sharing with
people that are newly diagnosed, because it is it's just
so much when you're first diagnosed to learn everything.
Speaker 1 (27:30):
Thankfully, treatment now is much more effective than the days
when people were rubbing arsenic on a psoriasis flare up,
but even so it can still be daunting. If someone
has been a little bit reluctant to open up to
their doctor and to really explore what treatments are available
to them, now is really the time to do it.
Do you have any pointers for people though, who might
(27:50):
be struggling to get what they need from their medical team,
like how to go into an appointment and feel like
you're going to get your message across and come out
with some real action item.
Speaker 2 (28:00):
I always spend some time prepping for my doctor's appointments,
writing down any questions I have. I look at even
what's new in the market, what's a newer medication. Is
that something that could work better for me or not.
I keep track just in a notes app on my phone,
of any symptoms I'm having, when they happen, how long
they're happening for. I think keeping track of what your
(28:21):
symptoms are and going into a doctor's office prepared with
any questions it makes it easier to just say I
have some questions and go through your list, because you
barely have a chance in those doctor's appointments to ask
anything or they're barely there with you. So just being
strong about saying no, I have a couple more questions
(28:41):
and advocating for yourself is really important to get the
treatment that you want to be on and that makes
the most sense for you.
Speaker 1 (28:48):
I know some people also go through that problem where
they will walk into a doctor's office with a very
obvious problem, and when they say what's wrong, they're like,
nothing much, Really, I'm pretty much fine.
Speaker 2 (28:57):
Yeah, And I think with sariasis too, you wait sometimes
so long for those appointments so when you finally have
the chance to sit with the doctor and talk through it,
having all of that information readily available is so important
because sometimes your next appointment won't be for next three
to six months based on the way their calendars fill out.
(29:18):
And also it's okay to change doctors. I think there's
dermatologists out there that are really comfortable and really knowledgeable
about psoriasis, and then there's others that really don't know
that much about it, and it's important to find someone
that you can talk to and trust and understand your
actual disease.
Speaker 1 (29:38):
And it's not there to dage your hands exactly.
Speaker 2 (29:41):
I mean that it's a great thing for some people, right.
Speaker 1 (29:44):
Nothing wrong with deaging your hands, but it's not the
same thing that a psoriasis patient needs. What suggestions do
you have for people who maybe don't have an autoimmune
condition themselves, but they love someone who does, there's someone
in their family or their friends circle with one. What
can they do you to help?
Speaker 2 (30:01):
I think just being there to support them and learning
as much as you can about it so that you
can have an idea of really what they're going through
on a day to day basis is really important, and
it makes them feel seen and that they don't have
to feel bad about canceling plans with you if they're
not feeling good. And maybe it's just being open to
suggestions about you know, oh, if you don't want to
(30:23):
go out, let's stay in and watch a movie. Let's
put some comfy clothes on. Getting dressed is always a
really big challenge when you have a flair because you're
just not comfortable pretty much in anything, and so just
being really supportive and understanding that sometimes things can change,
and they can change pretty quickly, and that you're just
there to help them mentally.
Speaker 1 (30:44):
Last, but not least, if you could send one message
to our listeners who might be grappling with their own diagnoses,
what would that be.
Speaker 2 (30:52):
You're not alone. There's a lot of people out in
the world who want to talk to you about their SHRIIASUS.
Anybody can email me, send me a direct message. I'm
happy to talk through any kind of advice or questions
or just if you want to say I want to
vent about psoriasis. There's somebody that is going to be
willing to listen to you. So you're not doing this alone.
Speaker 1 (31:14):
And again, your site is just a girl with spots.
What's the best way for people to get in touch
with you.
Speaker 2 (31:21):
I'm on Instagram at just a Girl a spot, so
I'm pretty easy to be found, and like I said,
I love talking about it, sharing my journey and just
being there to help others who are going through this
as well.
Speaker 1 (31:33):
Thank you so much for being here with us, Jonie,
and I want to make sure I thank our listeners
for coming on the journey of season one of Our Skin.
From pine tar to arsenic to modern biologics. The evolution
of the treatment of psoriasis owes much to the doctors
and crucially to patients throughout time who just wouldn't stop
(31:54):
asking questions about this condition. Striving to understand how psoriasis
works has unlocked incredible advances in minimizing its impact on
people's lives, and the future is really bright. As we're
wrapping season one, I have an ask for you. If
you like the show, please consider leaving us a review.
It really helps others to discover the podcast, and as
(32:16):
we know, it's all about community. Until next time, take
care of yourself and your skin and each other. Our
Skin 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
(32:38):
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. So today we are sitting
(01:09):
down with yet another incredibly inspiring guest, Joni Kazantsis. Joni
is not just a Sriasis advocate. She is also the
voice behind the just a Girl with Spots blog, which
is a resource and community hub where she shares her
personal journey living with siriasis and provides a space for
others facing similar challenges to find connection and information about sriasis.
(01:33):
When Joni was just fifteen, she woke up covered in red,
scaly spots. Looking back, they came out of nowhere. There
wasn't any big stressor or event that caused this initial flare,
and like many she faced the physical pain and frustration
of managing flare ups. But what really weighed on her
was the emotional toll. She remembers covering up her skin
(01:57):
to avoid stairs and comments, but her friends and classmates
were largely accepting. It was actually the reactions of adults
that stick in her mind now, like a very rude
woman at the beach who once asked Joni if she
was contagious, as if being a teenager isn't tough enough.
After years of struggling and navigating a medical system that
(02:19):
didn't always have clear answers, Jonie decided to take control
of her own narrative. She began writing Just a Girl
with Spots in twenty twelve as a way to share
her story, thinking she might reach a few people who
were going through similar experiences. That site has become a
hub of honest, raw and often humorist reflections on the
(02:40):
realities of living with psoriasis, everything from dealing with flare
ups in public to the anxiety of trying new treatments.
And this community became even more vital when Joni was
diagnosed with soriatic arthritis in twenty twenty at thirty eight
years old. Today, I am very pleased to say that
Joni joins us to share more about her journey, her advocacy,
(03:02):
and how just a girl with spots is helping others
feel less alone. So, Joni, thank you so much for
being here with us.
Speaker 2 (03:09):
Hello, how are you? I'm so excited to be here
and really appreciate the opportunity to come on and tell
my story and a little bit about the experiences that
I've had growing up with psoriasis and then being later
diagnosed with soriatic arthritis.
Speaker 1 (03:24):
I want you to take me back to what it
was like being fifteen and waking up covered in spots.
This seems like the teenager's nightmare. So what was that morning, Like,
how did your family react, what did you do? Tell
us how the whole thing played out?
Speaker 2 (03:39):
I panicked. It felt like I had a million bug
bites on top of a bad sunburn. I always had
a lot of allergies growing up, so my family thought
it was something I ate, or potentially that I came
into contact with outside at a soccer game the day before.
My grandmother actually lived with us, and she had a
mild case of psoriasis, but based on how severe it was,
(04:01):
even she thought it was allergies because she had never
had more than a few spots on her arm at
a time. I first saw my pediatrician because I was
so young, and they recommended a dermatologist. My dermatologist who
I was able to get into pretty quickly officially diagnosed
me with guttade and plaxiasis on my first visit. But
I was a fifteen year old girl. I was already
(04:22):
self conscious about my appearance, so this honestly felt like
the worst possible thing that could ever be happening to me.
Speaker 1 (04:29):
I imagine it feels like you went to sleep in one
body and woke up in another, Like how did you
even reconcile your identity? With yourself at that point.
Speaker 2 (04:39):
It's a tough age to begin with it. Yeah, there's
so much going on in your mind that is about yourself.
You're very much focused on what other people think of you,
and now to be covered in these red spots, my
first inclination was just to hide and isolate myself. It
(05:00):
was just really hard to understand for me that this
was a chronic disease. I thought I had no experience
with it, that I would go to the doctor, he
would give me a pill or a prescription and I
would put it on and it would go away. He
started talking to my mom and me that you know,
if this doesn't work, we have Plan B, and if
that doesn't work, we have Plan C, and so on
(05:21):
and so on and so on. And it was really
challenging for me to understand that this was going to
be something that I would have to live with for
my entire life. And because I was so young, they
didn't really want to be very aggressive with the treatment,
so steroids wasn't an option. Biologics at that age wasn't
an option for me. So it was a lot of creams.
(05:43):
It was light therapy treatment and things that I could
do from a lifestyle perspective.
Speaker 1 (05:49):
You have this somewhat unique experience in that you got
a whole new diagnosis much later in life to compare
and contrast with what it was like as a teen.
I'm curious how it felt to get that new diagnosis
at that point. You were thirty eight, you were a mom,
you had young kids, and then you're diagnosed to asiatic arthritis.
(06:09):
What was that like and did you think about it
at the time as a different experience from when you
were fifteen.
Speaker 2 (06:15):
I definitely felt more control because I always knew that
it was a possibility that I could develop soiatic arthritis,
so I knew a lot about it. When I was
first diagnosed with psoriasis, I knew nothing about it. I
didn't even I hated the word. I didn't even like
to say the word. And it was pre Google. You
couldn't just look it up and find out anything about it.
(06:36):
I got pamphlets at the doctor's office, and I couldn't
pronounce half of the words in those pamphlets. So I
knew a lot more about it, and I felt more informed,
and I could find out information and different things that
I could do to be more proactive with it. But
there was still that panic attached to it, because there
was a lot more determination to get the right treatment
(06:57):
right away so that I could maintain lifestyle. I'm really
hands on with the girls. I've led both of their
Girl Scout troops, I coach lacrosse. I'm on the ground
with them on the gym floor, making signs and decorations
for cheer competitions, and those were the things that I
really wanted to make sure that I could still do.
I love to exercise, I lift weights four times a week,
I'm running, I'm going on bike rides, So being able
(07:21):
to maintain mobility was just critical for me. So there's
just days when I need to push through it. But
I also think it's important for the girls to see
me taking care of my body and myself, So there
was more of a balance. But I definitely felt more
in control with this diagnosis. I don't want it. Not
a club that I want to be part of, but
something that I felt I was more capable of managing
(07:45):
at this age.
Speaker 1 (07:46):
Will you talk a little bit for our audience about
psoriasis versus soriatic arthritis. They're often related, but they are
not the same thing. So will you walk us through it.
Speaker 2 (07:55):
Yeah, So both are autoimmune diseases, So essentially your immune
system is attacking your own body and that's causing inflammation
in your body. Pyiasis symptoms appear on the skin with
thick scaly patches, and then soriatic arthritis really affects the joints.
I get the arthritis in my hands and my toes,
which makes some days a little bit slower than others
(08:17):
and a little bit harder to do. But there's always
ways I find that I can kind of cheat a
little bit, and I find ways to adapt. You can
have psoriasis and never develop soriatic arthritis. You can also
have zordiatgarthritis and not have psoriasis. So there's really a
lot of aspects to it that are still a mystery.
There's no real way to know if you get diagnosed
(08:39):
with one, if later down the line you'll get diagnosed
with the other.
Speaker 1 (08:42):
I know you've talked about from your point of view,
knowing that you had more information at hand when you
were an adult and you knew how to attack the problem.
But from the opposite side, how were the journeys different
in dealing with doctors, getting your diagnosis, getting treatments, figures doubt.
Speaker 2 (09:01):
With my SERISIS diagnosis. I was a kid, so my
mom took me everywhere I went. She was really critical
in that treatment journey and was ultimately making those decisions.
I was always part of the conversation and we talked
about what would work and not work for me. But
she was very critical in research, again pre Google era,
(09:23):
so when she does research, she was taking herself to
the library and she was finding what else we could
be doing. So first it was a pediatrician and then
a dermatologist, and then treatment was really a challenge, I
think for us because of the age. Steroids was something
that my mom just didn't want me to be on,
especially being fifteen and in that space of growing up
(09:45):
and getting older, which honestly was really frustrated for me
because I just so desperately wanted to have clear skin,
and I didn't want to be patient and see if
things would work, and I wanted to be as aggressive
as possible. Thankfully, I did have a patient parent who
understood long term that that would be something that could
(10:07):
potentially have side effects. So it was a lot of
creams and ointments. They were very messy, very smelly, like
coal tar things. That stained things that just were not
pleasant to put on your skin, and I struggled mentally
understanding that a flair could last months or years, and
then wrapping my head around again that I would have
(10:27):
this disease for the rest of my life, where with
soriatic arthritis, I've already come to terms the fact that
I live with psoriasis is just part of my life now.
I grew up with it every major event in my
life so far. I've had psoriasis at my wedding, my graduations,
both of my kids being born, and so soriatic arthritis
(10:48):
was new for me, and especially being diagnosed in twenty
twenty when we all know what a great year that
was for everyone, So this just kind of felt like
a cherry on top of just a fantastic, fantasts a
year for everyone. I started to get spots coming back,
but also for the first time, I felt it in
my joints, and I knew right away what it was.
(11:10):
And so every doctor's appointment I have, he would ask
me any joint pain, any of this, and so this
was the first time that I was like, yep, I
have joint pain. My hands hurt in the morning, Like
what can we do, and how can we get something
new going right away?
Speaker 1 (11:27):
How long did it take to settle into kind of
a regimen that controlled things. We've heard from all of
our guests that controlling psoriasis flares is about both medical
treatment and lifestyle changes. Was that the case for you?
And how long did it really take to get to
a point where you felt like either yoursriasis or your
criatic arthritis were under control as much as they could be.
Speaker 2 (11:50):
It took a long time, I think, especially because of
the age and the less aggressive treatments, to find that
balance with medication and lifestyles. As time went on, I
started to understand what my triggers were. Stress I very
quickly realized was something that was a trigger for me.
My dermatile just was really knowledgeable about psoriasis. We talked
(12:11):
about lifestyle changes. It was smaller things. It was like
night shades could be a trigger, so you shouldn't neet those,
or sunlight is good for your psoriasis. I vividly remember
going home from that appointment after you said that, and
immediately got a towel and I went out to sunbathe.
I also learned that day that you still need to
wear sunscreen even though the sun is good for psoriasis,
(12:32):
because a sunburn is actually much much, much worse. So
lived experiences in what works and what doesn't work lifestyle
to me now, when I think about my treatment, lifestyle
is a part of that.
Speaker 1 (12:47):
Tell me about starting just a girl with spots and
then sharing what hadn't hadn't worked for you, What was
going on? What was it like to just start sharing
your entire journey so publicly?
Speaker 2 (13:00):
Scary? I mean really scary. When I was first diagnosed,
I wouldn't be in a picture, I wouldn't say the word.
And I came home from a doctor's appointment. I was
living in New York City at the time with my
boyfriend now husband. I was really frustrated because when I
first called, they said he had experience with psoriasis. I
(13:20):
walked in, I sat in the office and there was
a video playing of him on a TV show talking
about his anti aging regimen and how you can come
into his office and get like your hands treated for aging.
And I was like, well, this isn't really what I'm
here for. So I started the blog because I really
wanted to be the resource that I needed when I
(13:42):
was first diagnosed. There's so much to know about living
with psoriasis that you really only get to understand if
you're living with it. So this was firsthand experience. There's
a lot of child and error, and if you're being
diagnosed initially, it is so much of a mental overload
to try to retain all of that information in one
(14:02):
probably fifteen minute if you're lucky, doctor's appointment. So the
goal really is to be able to provide resources and
support to others who are living with psoriasis. There's like
lifestyle tips on there, learnings, advice, just personal experiences, funny
jokes about living with it. And it's really just because
I don't want anyone who's living with psoriasis to feel
(14:23):
alone in their journey, no matter if they're newly diagnosed
or been living with it for years.
Speaker 1 (14:29):
Clearly you have always had support through your family, but
can you talk a little bit about the importance of
building community to your experience and how much has reaching
out to connect with others who know what you're going
through changed your day to day probably as much as theirs.
Speaker 2 (14:48):
When I was growing up, I had a lot of support,
but I also felt emotionally isolated because of it. I
didn't really feel comfortable talking to anybody about it, and
I had a lot of trouble describing just how it
felt because people think, oh, it's just dry skin or
it's itchy, but it was so much more than that,
(15:08):
and I couldn't really put it into words about what
it was. So when I first started meeting others in
the crisis community, and that was actually thanks to my mom,
who found us a in person meeting of the Natural
Psoriasis Foundation, I met other people who actually had psoriasis.
It just felt like I had found this missing piece
of the puzzle. So there's just so much relief in
(15:29):
talking to people who just get it. They understand. I
didn't feel alone. There's people that you could just vent to.
They understand the struggles of medications, putting things on the stains,
the flakes. I didn't learn anything in eighth grade or
whatever grade. I was maybe ninth grade science because that
was the year I was diagnosed with psoriasis, and I
(15:51):
had patches in my hair and flakes everywhere, and the
desks in science class were black, and so I spent
the entire period it's just making sure that nothing would
fall on the desk. So I can't tell you anything.
I think it was Earth's science that year. I know
nothing about it, and that is solely because of my poriasis.
Speaker 1 (16:13):
Like I don't know what the mantle and the crust are.
I know other stuff going on.
Speaker 2 (16:17):
There were no faith, That's all I was concerned about.
Speaker 1 (16:20):
Joni, thank you so much for talking with me about
all of this and sharing more of your story. We
will have more questions for you to come, but after
this break, we're going to talk about what a difference
hundreds of years of history makes. Our look back at
the history of how we treat our skin and the
conditions that affect it has shown us throughout this season
that there were some really rough times for soriasis patients
(16:43):
of all stripes over the years. Injecting arsenic comes to mind,
super gross. But we are in a pretty exciting age
of new treatments for autoimmune conditions, and chief among them
is biologics. So we're going to talk more about that
right after the break. Welcome back to our Skin. We
(17:19):
have covered a lot of ground, so for some context
on just what a remarkable moment this is in the
treatment of priasis and other autoimmune conditions, let's review Briefly,
For centuries, piasis was simply considered a skin condition, something
that caused red, scaly patches on the skin. This is
something Joni referenced earlier. The first accurate clinical description of
(17:44):
psoriasis as we know was offered by doctor Robert Willin
in eighteen oh eight. Willin, often called the founder of dermatology,
was the first to distinguish psoriasis from other skin diseases,
although his understanding of its underlying causes was a little off,
and our understanding of it was going to take some time.
(18:04):
Fast forward to the nineteen fifties, when treatment with ultraviolet
light and cordico steroids began to emerge. These were significant breakthroughs,
but they were based on the idea, again that syriasis
was purely a problem of the skin. So, Joni, you
have written about thinking soriasis was just a skin thing,
and we talked about that a little earlier. When did
(18:26):
you learn that it was an autoimmune condition?
Speaker 2 (18:29):
I would have to say that it was probably like
at least five to ten years into my diagnosis that
I really understood. It's when I started doing my own
research on it.
Speaker 1 (18:40):
So in the two thousands, pretty recently, it actually wasn't
until nineteen sixty three that a pivotal shift occurred in
our understanding of soriasis and soiatic arthritis.
Speaker 2 (18:51):
EJ.
Speaker 1 (18:51):
Van Scott published a groundbreaking paper revealing that pyriasis was
not just a skin condition, but an autoimmune disorder disease
in which the immune system mistakenly attacks the body's own tissues,
and this realization had profound implications for treatment, opening the
door to therapies that targeted the immune system rather than
(19:13):
just the skin. Understanding psoriasis as an autoimmune disease is
a game changer, and it was then It meant that
treatments could now be developed to target the underlying immune
processes driving the disease, rather than just addressing the symptoms.
This shift in perspective paid the way for more effective
and targeted therapies, including the development of something I know
(19:36):
Joni knows a lot about, which is biologics. Before biologics,
the primary systemic treatments for psoriasis were small molecule drugs
like methatrexate. Introduced in the late nineteen forties as a
cancer treatment, metatrex eate became the first choice for treating
severe psoriasis by the nineteen seventies. While it was somewhat effective,
(19:56):
Metatrex eight came with significant risks, including more than ten
black box warnings from the FDA, some of which involved
the risk of death. So this obviously was far from ideal,
especially for a disease that, while chronic, is not typically
life threatening. Joni, did you have any experiences with your
treatments that had major side effects, maybe worse than the
(20:19):
psoriasis itself.
Speaker 2 (20:21):
I was on not a biologic, but an oral medication
that I was on for only a week because the
stomach issues were just it was not good.
Speaker 1 (20:31):
So now your skin hurts and your digestive system is
also a mess, just what everybody wants, hot mess. So
enter biologics. That's a class of drugs that represented a
seismic shift in the treatment of autoimmune diseases like psoriasis.
But what exactly are biologics and how do they differ
from the treatments that came before them. So, in very
(20:52):
simple terms, biologics are large, complex molecules that are derived
from living cells, unlike small molluc drugs, which are chemically
synthesized and can be taken orally biologics are typically proteins
that need to be injected because they would be broken
down in the digestive system if you take them orally.
This difference in how they're made and administered, though, is
(21:14):
just the beginning. Small molecule drugs like methatrex eight work
by broadly suppressing the immune system, and that can of
course lead to significant side effects and an increased risk
of all sorts of infections as the immune system's operation
is hampered. In contrast, biologics are designed to target specific
parts of the immune system. This targeted approach means they
(21:37):
can be more effective with fewer side effects, making them
a game changer in the treatment of autoimmune diseases. I imagine, though, Joni,
because biologics are so focused, sometimes you have to try
different ones to see which is going.
Speaker 2 (21:52):
To work exactly. I've been on a few throughout the years,
and there's some that you tried, they don't work right away,
you have to change within a few months. There's a
few that I've been on that I've been on for years.
Speaker 1 (22:05):
Bodies are fascinating. Now let's get into the nitty gritty
of biologics, specifically, the different types of biologic agents used
to treatsoriasis, so first up TNF alpha inhibitors. The approval
of the first TNF alpha inhibitor in two thousand and
three mark the beginning of the biologic era in syriasis treatment.
(22:26):
The first biologics to be approved for cyiasis targeted a
molecule called tumor necrosis factor alpha or TNF alpha, which
plays a key role in inflammation. By blocking TNF alpha,
these drugs can reduce the inflammation that drives psoriasis and
joint pain caused by soiatic arthritis. Next IL twelve and
(22:48):
twenty three inhibitors. As our understanding of cyiasis improved, so
did the specificity of biologics. The next generation of biologics
targeted interluke in twelve and interlace uk and twenty three
cytokines involved in the immune response. By inhibiting these molecules,
these biologics could more effectively reduce the symptoms of psoriasis,
(23:11):
and the next advance was IL seventeen inhibitors. Further research
revealed that INTERLUCN seventeen or IL seventeen plays a crucial
role in how psoriasis affects our skin and joints. How
those characteristic symptoms show up on and in our bodies.
Biologics targeting IL seventeen have proven to be highly effective
(23:32):
in achieving clear or almost clear skin, a significant advancement
in treatment, and then, most recently, we have IL twenty
three inhibitors. These biologics focus on the INTERLUCN twenty three molecule,
which is another key player in the immune response. These
drugs offer even more targeted treatment options, providing new hope
(23:52):
for patients who may not have responded to earlier therapies. However,
biologics do still have some side effect. Although their targeted
nature is definitely a step up from many of the
places where we've been, people still have to watch out
for things that you might imagine when your immune system
gets suppressed, like increased risk of infections. So obviously it
(24:14):
is very important to talk thoroughly with your doctor before
and during treatment so that adjustments can be made if needed. Joni,
could you do something of a compare and contrast for
what you have been doing in terms of tweaking and
having these conversations with your doctor and how they have
played out versus years ago when you were much younger
(24:34):
and having a pre biologic effort to try to control
your psoriasis.
Speaker 2 (24:39):
It's honestly made a world of a difference. The biologic
that I'm on I take every eight weeks, So every
eight weeks I take a shot at home. It takes
two minutes to get all the materials out and do
the shot. Well, when I was on topicals, you're applying
those twice a day, and I was covered from head
to toe, so it would take a very long time.
It would take up to a hour to put this
(25:01):
medication on. So it feels from a time perspective, and
just mentally, there was so much fatigue about doing that
all the time. And now I just have to I
put a reminder on the calendar and I take my
shot and I'm done.
Speaker 1 (25:17):
This seems like much much easier to integrate into your
day to day life.
Speaker 2 (25:21):
Absolutely, because it's it's not even day to day.
Speaker 1 (25:24):
For those of you listening, you may be wondering where
do we go from here? Clinically, and today we stand
at the forefront of the second breakthrough in systemic treatments
for psoriasis. With the development of biologics and with these
highly targeted and effective therapies, the goalposts have shifted now,
achieving a ninety percent or for some people, even a
(25:44):
one hundred percent reduction in symptoms is a realistic goal
in clinical trials. But the story does not end there.
The future of soriasi's treatment lies in further refining these therapies,
conducting head to head trials of different bio logics, and
continuing to improve patient outcomes. While newer biologics have set
(26:05):
the bar very high, it's important to remember that older
biologics still have their place. For example, one of the
earliest biologics approved by the FDA twenty years ago has
one of the best safety profiles for older patients, so
it remains a valid and valuable option. As we continue
to learn more about the immune system and refine these therapies,
(26:27):
the future looks very bright for patients with psoriasis, and
who knows, the next big breakthrough could be just around
the corner. Joni, and talking through all of this history,
the obvious point here is that we have come so
far already. I feel like you are the textbook case
of someone who has seen it all and tried it all,
and it sounds like you feel like you've come a
(26:49):
long way in terms of treating and managing your psoriasis.
Speaker 2 (26:52):
Absolutely, I think that not only physically with the medications
that I'm on, but mentally, I know how to manage it.
I understand that it's not just a physical disease, and
it's important to recognize that having the mental support and
the physical support, and that holistic treatment that includes a
(27:13):
biologic which also includes the lifestyle. So there's just so
much more that I know and have learned throughout my
journey with this that I want to keep sharing with
people that are newly diagnosed, because it is it's just
so much when you're first diagnosed to learn everything.
Speaker 1 (27:30):
Thankfully, treatment now is much more effective than the days
when people were rubbing arsenic on a psoriasis flare up,
but even so it can still be daunting. If someone
has been a little bit reluctant to open up to
their doctor and to really explore what treatments are available
to them, now is really the time to do it.
Do you have any pointers for people though, who might
(27:50):
be struggling to get what they need from their medical team,
like how to go into an appointment and feel like
you're going to get your message across and come out
with some real action item.
Speaker 2 (28:00):
I always spend some time prepping for my doctor's appointments,
writing down any questions I have. I look at even
what's new in the market, what's a newer medication. Is
that something that could work better for me or not.
I keep track just in a notes app on my phone,
of any symptoms I'm having, when they happen, how long
they're happening for. I think keeping track of what your
(28:21):
symptoms are and going into a doctor's office prepared with
any questions it makes it easier to just say I
have some questions and go through your list, because you
barely have a chance in those doctor's appointments to ask
anything or they're barely there with you. So just being
strong about saying no, I have a couple more questions
(28:41):
and advocating for yourself is really important to get the
treatment that you want to be on and that makes
the most sense for you.
Speaker 1 (28:48):
I know some people also go through that problem where
they will walk into a doctor's office with a very
obvious problem, and when they say what's wrong, they're like,
nothing much, Really, I'm pretty much fine.
Speaker 2 (28:57):
Yeah, And I think with sariasis too, you wait sometimes
so long for those appointments so when you finally have
the chance to sit with the doctor and talk through it,
having all of that information readily available is so important
because sometimes your next appointment won't be for next three
to six months based on the way their calendars fill out.
(29:18):
And also it's okay to change doctors. I think there's
dermatologists out there that are really comfortable and really knowledgeable
about psoriasis, and then there's others that really don't know
that much about it, and it's important to find someone
that you can talk to and trust and understand your
actual disease.
Speaker 1 (29:38):
And it's not there to dage your hands exactly.
Speaker 2 (29:41):
I mean that it's a great thing for some people, right.
Speaker 1 (29:44):
Nothing wrong with deaging your hands, but it's not the
same thing that a psoriasis patient needs. What suggestions do
you have for people who maybe don't have an autoimmune
condition themselves, but they love someone who does, there's someone
in their family or their friends circle with one. What
can they do you to help?
Speaker 2 (30:01):
I think just being there to support them and learning
as much as you can about it so that you
can have an idea of really what they're going through
on a day to day basis is really important, and
it makes them feel seen and that they don't have
to feel bad about canceling plans with you if they're
not feeling good. And maybe it's just being open to
suggestions about you know, oh, if you don't want to
(30:23):
go out, let's stay in and watch a movie. Let's
put some comfy clothes on. Getting dressed is always a
really big challenge when you have a flair because you're
just not comfortable pretty much in anything, and so just
being really supportive and understanding that sometimes things can change,
and they can change pretty quickly, and that you're just
there to help them mentally.
Speaker 1 (30:44):
Last, but not least, if you could send one message
to our listeners who might be grappling with their own diagnoses,
what would that be.
Speaker 2 (30:52):
You're not alone. There's a lot of people out in
the world who want to talk to you about their SHRIIASUS.
Anybody can email me, send me a direct message. I'm
happy to talk through any kind of advice or questions
or just if you want to say I want to
vent about psoriasis. There's somebody that is going to be
willing to listen to you. So you're not doing this alone.
Speaker 1 (31:14):
And again, your site is just a girl with spots.
What's the best way for people to get in touch
with you.
Speaker 2 (31:21):
I'm on Instagram at just a Girl a spot, so
I'm pretty easy to be found, and like I said,
I love talking about it, sharing my journey and just
being there to help others who are going through this
as well.
Speaker 1 (31:33):
Thank you so much for being here with us, Jonie,
and I want to make sure I thank our listeners
for coming on the journey of season one of Our Skin.
From pine tar to arsenic to modern biologics. The evolution
of the treatment of psoriasis owes much to the doctors
and crucially to patients throughout time who just wouldn't stop
(31:54):
asking questions about this condition. Striving to understand how psoriasis
works has unlocked incredible advances in minimizing its impact on
people's lives, and the future is really bright. As we're
wrapping season one, I have an ask for you. If
you like the show, please consider leaving us a review.
It really helps others to discover the podcast, and as
(32:16):
we know, it's all about community. Until next time, take
care of yourself and your skin and each other. Our
Skin 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
(32:38):
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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