September 5, 2024 • 34 mins
Reena Ruparelia has lived with psoriasis since she was in high school. But she didn’t start sharing about her experience until 20 years later. Stigma played a role in her hesitancy to speak out, but a major factor was the difficulty in finding a doctor who really listened, and a treatment that worked. Until patients find treatment, it can feel like their life is on hold–but Reena has a message of hope for anyone still looking. Reena’s story ties in perfectly to the history in this episode, which goes step by step through the evolution of psoriasis treatment, from ancient times to our modern medicines today.
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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. Today. We are joined by
(01:09):
well being coach, mindfulness guide, and skin empowerment leader Rena Ruperelia.
I am so glad to welcome her today. Rena has
lived with soriasis since she was in high school, but
she didn't start sharing about her experience until twenty years later.
She first noticed symptoms of sriasis when she was just fourteen,
and at the time, of course, as a teenager, that
(01:32):
experience was deeply isolating, Like many people facing a chronic condition.
For a while, she tried to hide what was going on,
hoping that maybe someday things might change on their own.
But when they did not, Rena hit a point where
she couldn't get by on hope alone. Her symptoms had
continued to intrude into her life for decades, and she
knew it was time to find treatment. So that, of course,
(01:54):
sounds really easy, go to a doctor, get a prescription
treatment treatment, But just as a lot of syriasis is
patients have experienced, the path to treatment for Rena was
anything but easy. She found herself battling a reluctance to
open up to her doctor and hesitancy from having used
treatments in the past that just didn't work at all,
or perhaps even exacerbated things. One of the sources of
(02:17):
strength that Rena was able to draw upon during this
difficult time. Was her mindfulness practice something that we're going
to ask about for sure in our interview today. And
she has also started sharing with others and putting her
journey out there online and finding that her story empowers
others as well as herself in the process. So eventually,
Rena fortunately found a doctor that understood and her soriasis
(02:40):
became more under control. So Rena had a new message
to share with her followers. Open up to your doctor
and you might be surprised what they're able to do
to help. And your story, Rena ties in perfectly with
the history that we're going to discuss today, which is
going to take us on a step by step tour
of the evolution of Sorias's Street from ancient times to
(03:01):
our modern medicines. And I am so excited to talk
to Rena today about her experience because there are a
lot of barriers for people that seek treatment, from stigma
and embarrassment to doctors who maybe aren't always that knowledgeable
about skin conditions. It is a lot to take on
as a patient and as a person. So Rena, welcome
to our skin I'm so delighted that you're here.
Speaker 2 (03:23):
Thanks for that beautiful introduction, Holly, that was perfectly summarized.
Speaker 1 (03:29):
I'm glad. I never want a misstep. It's always that
awkward thing when you're telling someone else's story while they're
sitting there. So I'm glad it all vibed right. I
would love it if you would take us back to
your first inclinations when you were like, I might actually
need to seek medical treatment for this skin condition. But
first I want to ask how did your symptoms manifest initially?
Speaker 2 (03:52):
Yeah, they actually tie in perfectly together. So, like you mentioned,
I was in high school. We were just about to
go into high school. So it was like two months
before the summer. I was in England seeing my family,
living my best life, and all I just kept thinking
about was I can't wait for the first day of
(04:13):
grade nine.
Speaker 3 (04:13):
I'm going to meet all these new people.
Speaker 2 (04:15):
I'm so excited and thinking about all the boys and
all the fun and all the things. But my skin
had a different plan. So I just remember I was
in England and I looked down at my stomach and
I had these red dots.
Speaker 3 (04:31):
They look kind of like chicken pox. I didn't know
what they were.
Speaker 2 (04:34):
I thought maybe bug bites, but as the weeks went on,
the days went on, they were growing and kind of spreading,
but they still look similar.
Speaker 3 (04:42):
So I ran to the.
Speaker 2 (04:43):
Doctor and I was like, you got to fix this.
Like I'm about to start high school. I need to
get rid of this now. So he's like, oh, you
just have chicken pox. Like it's just chicken pox, right,
he didn't know it kind of looked like it.
Speaker 3 (04:59):
I was happy. I went home, asked no questions.
Speaker 2 (05:01):
But again, as I mentioned, as the days went on,
the weeks went on, it started growing even kind of
and spreading, and the scales went from these like red
dots to these silvery scales. And eventually I went back
again and he said, oh, I think you may have psoriasis.
Speaker 3 (05:18):
I didn't know.
Speaker 2 (05:19):
There was no Google then, right. It sounded like a dinosaur.
To be honest, I had no clue how to even
spell it. I didn't know what it was, never heard
of it. All I cared about was ken you get
rid of it. And that's kind of I think when
my life changed, especially when it comes to my skin.
So that was the moment, and the line you know
(05:42):
that I always remember is I can't confirm for sure.
You know you can try this cream, and there's no cure,
but we can find a way to manage it, but
we have to wait for the dermatologist.
Speaker 1 (05:53):
That's just what a fourteen year old wants to hear too.
It's like we're gonna have a lot of guesswork ahead
of us, no problem. I wonder at that age, especially,
kids are not sharing the things that they're embarrassed or
self conscious about. Did you know anyone else that was
dealing with anything similar or did you feel like the
only person on earth that had this condition?
Speaker 2 (06:12):
Yeah, what a good question. I thought I was the
only person on earth with the condition. I kept hearing
this story, and I still hear it to this day.
Your aunt had it on her finger. She got rid
of it by wrapping it up with this, this, and this.
Your grandmother rather has eggzema as well as my father.
But to be honest, no one was really talking about it.
(06:33):
There was just that story about my aunt wrapping up
her hands, which I said, like, I still here to
this day, and she was able to get rid of it.
I have brought myself up with everything and anything, and
I still had it, So it.
Speaker 1 (06:47):
Did a Nobody knows if that was even what she
was dealing with right, like she may have had an
allergic reaction to something. There's no there's no actual science
data to put.
Speaker 3 (07:00):
But it's brutal. Yeah, it truthfully all jokes aside. I
just remember just thinking like what is this?
Speaker 2 (07:05):
And I did feel like I was the only one,
and so there was so much that went into that. Again,
like you mentioned, as a fourteen year old girl, I
was really worried about my image and fitting in looking
like everyone else. I didn't want to have this thing
or this skin that made me quote unquote different.
Speaker 1 (07:27):
Right, you did not think you were turning into an
X man. You just thought you were.
Speaker 3 (07:32):
I wish that's what happened, If I'm honest.
Speaker 1 (07:35):
By the way, I'm mistique now just funny exactly. I'm
wondering too, though you mentioned like the words that were
terrifying were like, we don't really know, we're gonna try
some things. What challenges were there in those initial treatment stages.
I know, even just like talking to a doctor as
a teenager about anything is already tough, so then to
(07:57):
be in this loop where you're having to give feedback
and time about what doesn't doesn't work and what things
feel like. What was that all like probably very scary.
Speaker 2 (08:06):
Absolutely, And I will say, although I've gotten better with
having the conversations now, it still continues to be challenging,
right to figure out what's gonna work, what's not gonna work,
because treatments need reevaluation and change often, which I didn't
know but in the beginning stages the first Okay, so
after I actually got diagnosed with SIISIS, which in itself
(08:26):
was a horrible experience because I was feeling so vulnerable
and the doctor, the dermatologists at this point, came in,
took a look at my skin, didn't really talk to me.
I waited three months for this appointment. Side note, like
three months, you know, I'm like, he's going to cure me,
or they're going to cure me.
Speaker 3 (08:42):
Wherever it is. This person is going to cure me.
Speaker 2 (08:46):
And when I went to the actual office, like I said,
he took a quick look, then brought all of his
students in.
Speaker 3 (08:53):
And they also, I guess my mom must have given
them permission.
Speaker 2 (08:56):
And I'm just sitting there right like a specimen on
the table like it was.
Speaker 3 (08:59):
I just remember feeling humiliated, embarrassed.
Speaker 2 (09:02):
I was covered at this point as well, because it
was all over my legs, now spread from my stomach
to my back to my arms, and they're all kind
of just looking at me.
Speaker 3 (09:10):
And eventually he gives.
Speaker 2 (09:11):
Me this crude cold tar and it's exactly what it
sounds like. It's like this green, kind of dark brown,
slimy paste that smells like mothballs. So you slather it
on at night. It stains everything and then you wake
up in the morning and you wipe it off with towels.
My mother had to help me, and it really smelled
(09:33):
number one, but number two, the skin didn't really clear.
I still had like so I'm you know, South Asian,
so I have more melanated, darker skin. And then I
ended up with these like light patches where the psoriasis
was everywhere. The hyperpigmentation was brutal, but it never went away.
It was still itchy all day under my clothes. All
I remember is just wanting to scratch my skin off.
(09:56):
And so the beginning parts of treatment included, you know,
something like that. I went for like light treatment like
a lot of people do. I did cortisone creams and
it was always sticky fingerprints everywhere, you know, smelling not
very good and Also I was in these clothes that
just covered every part of my body, like where this
risees showed, so that I didn't want to do gym class.
Speaker 3 (10:18):
I was.
Speaker 2 (10:18):
People are like, aren't you hot? Like I just remember
that question, aren't you feeling hot? Like no, I'm fine,
I'm fine, I'm always cold. Meanwhile, yeah, sweltery link sweltering.
It was like my favorite time of day was coming
home after school, taking off everything and going for like
a scratch fest and like it was so bad for
the skin, but I was just it was the only
(10:40):
relief I had.
Speaker 3 (10:41):
So I lived a lot of that.
Speaker 2 (10:43):
First part of my journey with just creams and potions
and anything. Nothing took it away because work for me,
I guess it's different for everyone. For me, it meant
clearing the skin completely and nothing was working.
Speaker 1 (10:55):
You have also talked before about how transformative it was
when you finally found a doctor who actually understood How
did you know? Because I think this is whether you're
dealing with a chronic condition or not. Finding that right
doctor that you click with is really really hard. How
did you know when you had found the doctor that
was right for you? What were the green flags where
(11:15):
you're like this one's different.
Speaker 2 (11:17):
Yes, that's a really good question. It's really ideal to
find the right doctor. But depending on where people live,
depending on the access they have, it might not be
possible to find the right doctor because there might not
be a choice of people around. You know, I live
in an urban center. We have dermatologists everywhere, so I
(11:38):
do have choices. But how I knew doctor yadav is
my doctor here in Toronto.
Speaker 3 (11:43):
She was different.
Speaker 2 (11:45):
She was very, very confident. So first of all we
had like an offline conversation. We were like creating a
piece together and then kind of when we finish the work,
she said to me, you know, Rena, you don't have
to live like this, Because I was like, I am
happy in my skin. I am here for it. I'm
taking care of myself. But if I have some risis,
(12:06):
it's fine. But I was uncomfortable, like I didn't have
a goal for clear skin. At that point, I had
given up. And she when she said I can help you,
something in me was like, what you can help me?
Speaker 3 (12:18):
What like are you?
Speaker 2 (12:19):
And she was so confident And that's the part of it.
I think that really worked and clicked for me. There
was that her ability to say like I want to
help you, like we will find something that works and
you don't have to feel this way, like, yes, you
found a way through, and yes you feel empowered and
okay with the way your skin is, but there's hope.
Speaker 1 (12:44):
It sounds almost like this is the first time you
really felt like taken care of by a doctor. Like
doctors are always there to take care of you, but
it's a different thing when you're like I feel taken
care of.
Speaker 3 (12:55):
Yes, that's like on the money.
Speaker 2 (12:58):
There absolutely when someone gives you that feeling of self assuredness,
she really does want to make her patients feel better
and give them a better quality of life. She takes
that extra step, And I think that is the person
I fell cared for. And yeah, scene and she understood
like it was tough, like I was having a rough time.
Speaker 1 (13:21):
One of the things that you talk about, it's like
the animating idea of all of your work is you
deserve to feel good. And it's such a simple and
basic concept, but I think for a lot of people
that's very hard to really internalize, especially when they're dealing
with a chronic condition. There's all of this weird mental
and emotional baggage that comes with it. Sometimes there's whether
(13:44):
you're conscious of it or not. People will think there's
something bad or wrong about them, or that they did
something wrong in their skincare or in their health care.
But this idea, if they could just get it into
their minds, is something to embrace, deserve to feel good.
But I want to know how that has shaped your
(14:04):
particular brand of activism.
Speaker 3 (14:06):
Ugh.
Speaker 2 (14:07):
I also found it to be such a powerful line,
hence why I put it on the website, because it
was something I didn't believe. I thought, because I was
sick and I had this skin condition, that feeling good
was beyond my reach. It was beyond what was possible
for me, and that I didn't deserve it.
Speaker 3 (14:25):
I didn't deserve this.
Speaker 2 (14:26):
Feeling of peace of ease in my body, regardless of
what my skin looked like. And so as I started
taking care of myself and opening up more about my
story online, I started to challenge what I believed what
was possible for me as an individual and as a human.
So it was really important for me to take care
(14:50):
of myself and learn how to do that.
Speaker 3 (14:53):
Even if my skin.
Speaker 2 (14:54):
Was flared, I was still deserving of a massage.
Speaker 3 (14:58):
I was still deserving going to a beach. That was
something that I wouldn't do.
Speaker 2 (15:03):
You know, if someone had a pool party or we
went on a vacation, I would go tan on the
other side of the beach because I didn't want anyone
to see me. And I had to learn to tell myself,
you deserve to be here, You deserve to be part
of this as well. You deserve to dance, you deserve
to wear these clothes like you are deserving of these
things as well. Your skin doesn't make you unworthy. Your
(15:25):
skin doesn't make you less than. What are the things
that somebody who cares about themselves, who gives a damn
about themselves would do?
Speaker 3 (15:32):
What does that look like?
Speaker 2 (15:35):
And so that started as me putting out these challenges
when I first started my page. You know a lot
of people and I don't think this is just with skin.
Will say when my skin is clear, then I will
dot dot dot, wear the shorts, go to the beach,
go to the wedding, and sandals. These like tiny little
things that maybe a lot of people don't think about.
(15:56):
I was thinking about them all the time, and so
it was starting to challenge myself. And then as I
started to feel good and see that a lot of
these barriers were only built up in my mind. Like
most people were receiving me in a good way. This
was an evolution, and so feeling good or feeling better
and giving myself the opportunity to challenge what I thought
(16:18):
I didn't deserve really helped me break into Yeah, starting
to feel good and giving myself things that would help
me feel whole and content.
Speaker 1 (16:28):
I also wonder because with any medical condition, it's for
the most part, especially something like this, that can progress
and shift. It's not like it all happens at once.
It's something that's slowly growing over time. So your brain
is sort of adjusting to you. I guess this is
the new normal, and you're not really cognizant of how
much you've given up until you like have one great
(16:50):
day and then you're like, what it could be like
this all the time. So I think that's also important
for people to remember, right, this is kind of a
mantra you need to maintain.
Speaker 2 (17:00):
Yes, like you said, there was this feeling when I
found the right treatment and my skin started to clear.
I didn't know it was possible to feel this way,
And I'm so grateful that for me that I was
open to treatment and that I was open to trying
something new, because it really has made all the difference.
Speaker 1 (17:22):
Rina, thank you so much for sharing your story with us.
When we come back, I have some history I'm going
to share with you, some of which is going to
sound very familiar. After this break, we will take a
look at siasis treatment throughout our history, starting with Hippocrates
in ancient times, running all the way through to advanced
treatments that are available today. We've covered in previous episodes.
(18:01):
Ciriasis has always been with us. The ancient Greeks were
well aware of it, although they did not call it
psoriasis for quite a while. The physician Hippocrates, who lived
around four sixty to three seventy BCE, is often credited
with being one of the first to document treatments for
skin condition that we now recognize as psoriasis. One of
(18:22):
his go to remedies was pine tar. That's right, thick, sticky,
and pungent pine tar. Pine tar has actually been used
for centuries as a topical treatment because of its supposed
ability to reduce inflammation and relieve itching. So over the
centuries it's been applied to the scalp the trunk, the limbs,
pretty much anywhere of those suffering from psoriasis, and while
(18:45):
in some cases it actually could provide some relief, it
obviously comes with some downsides. The heavy, dark substance could
also irritate some people's skin, so that is the opposite
of the desired effect, and there's that strong, lingering odor
not super pleasant. With the advent of the Industrial Revolution,
pine tar's cousin which Rina mentioned, coal tar, came into
(19:07):
the picture, and coal tar is of course thick, heavy
oil that's derived from coal. It emerged as a ciasis
treatment due to its similar anti inflammatory and anti itch properties,
and by the early twentieth century, coal tar had become
a staple in the dermatologist toolkit. So each of these
types of tars are distilled the same way from their
(19:29):
origin substances using extreme heat. Basically, if coal or wood
is burned at really really high temperatures in an absence
of oxygen, the result is a tar that can be
put into soaps, lotions, foams, other kinds of topical applications.
And actually why tars sometimes work on poriasis is not
(19:49):
still super well understood. But coal tar, as we know
from Rena's story is still recommended today by the American
Academy of Dermatologists, and the best that we can tell
is that these tars slow down skin cell growth, which
can reduce the severity of the plaques that often accompany pariasis.
But these are, after all products that also have industrial uses,
(20:13):
so they are not necessarily gentle. Side effects can be
very serious, including in some people an increased risk of
certain cancers, and some people, such as anyone who's pregnant,
is not recommended to use these kinds of treatments. So Rena,
I was a little bit shocked that the ancient Greeks
were like, yes, let's put pine tar on people. I
didn't know until working on this show that people were
(20:35):
still using col tar, and you are an example of
that today. Did you know that pine tar was in
the mix?
Speaker 3 (20:41):
I had no clue.
Speaker 2 (20:42):
I am I'm shocked, but I have used pine tar,
which is interesting.
Speaker 3 (20:47):
I feel like someone gave it to me because I
did have it. You know what, people are always like, hey,
if you tried, does have you tried?
Speaker 1 (20:52):
That's I'm shocked, like an old wives remedy that they're like,
I prepared some Yeah, apparently they're going all the way
back to Hippocrates. With that, you also mentioned some light
therapies That goes back to nineteen twenty five, when an
American dermatologist named William Gekerman discovered that combining coal tar
with ultraviolet light therapy was particularly effective in treating pariasis.
(21:16):
That method, still known as gekermann therapy, involves applying coal
tar to the skin and then exposing it to UVB light,
and that combination helps slow down rapid skin cell turnover,
which is what characterizes psoriasis. It provides significant relief to
a lot of patients, but we can't pat ourselves on
the back too much. Long before Geckerman's discovery, sunlight itself
(21:39):
was already recognized as a valuable ally in the fight
against sariasis. Ancient physicians noted that exposure to sunlight could
help alleviate the symptoms, especially if it was used in
conjunction with topical treatments. However, not everyone could afford to
spend hour sunbathing, and of course we know excessive sun
exposure has its own set of risks, including skin damage
(22:02):
and an increased risk of skin cancer. Light therapy, which
I want to ask you about because you've done It
can be used alone or in combination with topical medications
or tablets that will increase your sensitivity to UVB or
UVA light. The latter of those is prescribed for young
or more sensitive patients, and those sessions, according to our
research I've never done one can last just a few minutes,
(22:24):
and they're typically given two or three times a week
for like a six to eight week run. But the
effectiveness and options depend on a wide range of factors,
including the type of severity of psoriasis, other health conditions,
as well as any medication. So you mentioned light therapy.
Tell us about that. It sounds in theory to someone
that's not done it very nice, like, oh, you need
a sunbath, let's do light therapy. But what is it
(22:46):
actually like?
Speaker 3 (22:47):
I know, imagine, yeah, you go into this beautiful zen spot. No,
actually it's like that at all.
Speaker 2 (22:54):
So, like you mentioned, in addition to the coal tar
that I was putting on every night, now three times
a week, we were going to this light therapy. So
it's a chamber essentially, and you're in there for like
ten seconds, but I remember, to get there it would
take an hour, and to get back it would take
an hour because it was so far. So it's just
(23:14):
like going into a tanning booth, but a standing up
tanning booth. You kind of do this for ten fifteen seconds.
It wasn't a few minutes. It was very quick, and
that was that, and it works. It worked for me
at least, and it's worked for people who I've talked to.
But eventually you're just like, I don't this seems a
bit odd just to drive for a ten second stand
(23:34):
up session and come home.
Speaker 3 (23:35):
Some people bring them into their house, right, thousands of dollars,
you know.
Speaker 2 (23:39):
So for me it did help, but I got really
tired very quickly, so after the first stint I was done.
Speaker 3 (23:46):
Well.
Speaker 1 (23:46):
It's good that you mentioned that, though, because it is
a cool therapy. It does work for a lot of people,
but it doesn't mean that it's easily accessible for everybody.
You know, if you're not in a metro area, your
odds of finding one in driving distance are probably pretty low.
And the other option is to go to great personal
expense to build one.
Speaker 2 (24:05):
It's true, and not to go to the tanning booth.
Because a lot of people are going to the tanning booth.
I think it's not the same thing. It's that like
you mentioned UVB versus UVA, So right, yes.
Speaker 1 (24:16):
Don't do that, that's not your treatment. I do want
to shock you with more things, because moving into the
Victorian era, there were some very alarming treatments going on,
including diluted tinctures of arsenic and mercury that were used
to treat various skin conditions, including psoriasis. These are obviously
incredibly toxic and their use usually did more harm than good.
(24:40):
In some cases, people were even advised to inject these
very dangerous chemicals directly into their bodies. That's a stark
reminder though, of how desperate people have been over the
ages to get some relief and how limited medical knowledge
was at the time, and that combination was brutal and
probably deadly for some people. We don't really have any
(25:01):
hard data on how many people died from injecting our
snack to treat skin conditions, but I bet you it happened.
And then in the early nineteen hundreds, there was another
topical treatment that came into play called dithronol. This compound
is derived from the bark of the aerobatry and it's
found to be effective in slowing down skin cell production.
And therefore reducing the severity of plaques that develop. However,
(25:24):
it was not widely used in the United States because,
like other treatments, it could discolor the skin and stain
clothing and bedding. That's not super practical for everyday use.
As recently as nineteen fifty six, medical literature still mentioned
using mercury in topical ointments for psoriasis. We know now
that mercury is highly toxic and can cause serious health issues,
(25:46):
but even in the mid twentieth century it was one
of the few options that was really available to doctors
and patients. So throughout history there have been various unorthodox treatments,
herbal concoctions, and then my favorite, snake oil, which were
often touted as miracle cures. We use the term snake
oil today to talk about something that is a fake
medicine or like something a carpetbagger would sell you that's
(26:09):
not going to do any good and might in fact
harm you. But there are actual snake oils that work.
The snake oil concept derives from an old Chinese remedy
that made use of the black banded secret it's also
known as a Chinese water snake, and that had legit
anti inflammatory effects because Chinese water snakes have a very
high concentration of omega three fatty acids. But when that
(26:32):
remedy made its way to North America via immigration, there
were a lot of Charlatans that picked up on it,
particularly in the American West, and they started making their
own version of the Chinese cure. But they used just
about any snake they could find, including rattlesnakes. Those do
not have the same beneficial omega threes, and that is
how that term transitioned to become snake oil in our
(26:55):
lexicon as something that's worthless and possibly dangerous in terms
of health treatments. There are also, of course, indigenous tribes
that have had their own remedies, including the use of
buds from the balsam poplar that has been used to
treat soriasis in other skin conditions. And of course, today,
as Rena knows, there are a lot of changes in
(27:17):
our understanding of psoriasis. We know it's not just a
skin condition, which is how it used to be treated.
It is an autoimmune disease. This means that the body's
immune system is mistakenly attacking healthy skin cells. That's what
leads to that rapid skin cell turnover we've been talking about,
and that's what causes those characteristic red and scaly patches.
(27:38):
Here's what I wonder as I'm talking about all of this, rena.
There are so many treatments now for psoriasis that I
imagine even that becomes its own. While it's like they're
an array of things we can try. That is probably
intimidating in and of itself. Since you have a community
around this, do you find that a lot of people
are going through trial and error? And what is that
like again mentally in emotion? Is there a point where
(28:01):
some patients are just like I'm done, I'm not going
to deal with this anymore.
Speaker 3 (28:05):
Yes, I found that with myself and with others.
Speaker 2 (28:08):
It is exhausting, especially when something doesn't work and you
have so much hope. You're trying everything, You're hoping it's
going to work, and it doesn't, and then you're like,
should I bother going through the whole process of getting
something else? So, yes, people get tired, And I always say,
you know, it's okay to take a break, but don't quit, Like,
(28:29):
just try as much as you can. And I would
give that same advice to myself who went through years
and years of just giving up completely and my skin
going wild. I was like, nothing's going to work, So
what's the point. So I think people do get tired,
and there is trial and error, but take a break, rest,
give yourself a moment, and then get back on that horse,
because as I've said, for me, I've found something that works.
(28:52):
And the science is so much more sophisticated than it was,
you know, years ago. So as you educated me with today,
I was like, I'm still happy I wasn't born in
the twenties.
Speaker 1 (29:04):
Yeah, right, And the thing is too we mentioned and
we know topical treatments don't address the root cause of psoriasis, right.
They may help with your skin, but you're still having
an autoimmune system. This is where, of course, a much
newer treatment comes in, which is biologics. Biologics are a
class of drugs that was first approved in the US
(29:26):
by the FDA in the early two thousands, and they
target specific parts of the immune system involved in the
inflammatory process, and by inhibiting certain immune responses, biologics can
significantly reduce the symptoms of psoriasis and improve quality of
life for a whole lot of patients. Biologics have obviously
revolutionized the entire treatment possibilities for moderate and severe psoriasis.
(29:51):
They are typically administered by injection or intravenous infusion, and
they can actually provide some very long lasting relief. And
as we reflect on the h of soriasis treatments, it
is clear we have come a very long way from
the days of pine tar and arsenic thankfully, and other
toxic chemicals. Our understanding of the condition has deepened and
with it our ability to manage it effectively. And while
(30:14):
there is still no cure, advances in medical research continue
to bring hope to millions of people living with this
challenging condition. So I think the most important takeaway from
all of this is that we really have come very
very far right. Treatment is way more effective than it
was in the early days, no more arsenic. So if
(30:34):
someone has been reluctant to open up to a doctor
and see what treatments are available, now is a great
time treating a chronic skin condition. I know we've said
it a million times, but it bears repeating. It's not
a straight line, as our dip into history shows, but
it is really amazing to know that there's a lot
that's been done to make living with poriasis so much
(30:55):
more doable and so that people can embrace the idea
that they deserve to feel good. There are things you
can do every day to feel better emotionally and physically,
and you just had to find what works for you.
So I want to come back to that idea arena
of you deserve to feel good, because we all deserve that.
But that is also not a straight line. What got
(31:16):
you through those times where treatment wasn't working or you
just weren't feeling good about the whole.
Speaker 2 (31:21):
Journey, you know, I just went through that phase in
December recently, on New Year's Eve. I yeah, my treatment
just wasn't working and I had to And now again
I've found good treatment because I went back. I didn't
give up. But during that really hard time, I noticed
how everything I intellectually knew just went out the window.
(31:41):
I didn't follow any of my own advice. I just
felt hopeless. I laid in bed, I was swollen, I
was sad, and what helped me was asking for help,
going to my therapist, which I'm lucky enough to have,
asking my family for support, telling my friends I'm struggling.
Speaker 3 (31:58):
I really need someone here with me, and.
Speaker 2 (32:00):
Then also telling myself it's okay, like having some self compassion.
It's okay that you're here and you're having a hard time.
You're not doing the quote unquote things you should be
doing or could be doing.
Speaker 3 (32:14):
It's okay to.
Speaker 2 (32:14):
Have a moment and be sad and grieve the pain
and give yourself what you need. But I said to myself,
you know, after a week of this, you're not going
to pack your bags and move into the space. It's
time to get back on the horse, like get the
support that you need, like I said, and also go
(32:35):
back to the doctor and talk to her about what
is possible. And we were able to find something that worked.
I was nervous because I'm like, oh, I'm going to
go right back to where I was. But yes, it's
it's truly learning to ask for help and support and
knowing that I don't have to do it alone. That's
changed my life.
Speaker 1 (32:54):
Rina, you are an angel and your story is so powerful.
If you could send one mess to listeners who might
be grappling with their own diagnosis, what would that be.
Speaker 2 (33:06):
I think everything that we've said through this, but it
would be that there is a hope and that there
is change, and although right now you may not know
what direction you need to go, it is possible to
find the care. Just don't give up and be open
to what might be possible for you.
Speaker 1 (33:23):
I love it. Thank you again so much. You're such
a delight.
Speaker 3 (33:26):
Thanks Hollie, love to convo.
Speaker 1 (33:33):
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 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. Today. We are joined by
(01:09):
well being coach, mindfulness guide, and skin empowerment leader Rena Ruperelia.
I am so glad to welcome her today. Rena has
lived with soriasis since she was in high school, but
she didn't start sharing about her experience until twenty years later.
She first noticed symptoms of sriasis when she was just fourteen,
and at the time, of course, as a teenager, that
(01:32):
experience was deeply isolating, Like many people facing a chronic condition.
For a while, she tried to hide what was going on,
hoping that maybe someday things might change on their own.
But when they did not, Rena hit a point where
she couldn't get by on hope alone. Her symptoms had
continued to intrude into her life for decades, and she
knew it was time to find treatment. So that, of course,
(01:54):
sounds really easy, go to a doctor, get a prescription
treatment treatment, But just as a lot of syriasis is
patients have experienced, the path to treatment for Rena was
anything but easy. She found herself battling a reluctance to
open up to her doctor and hesitancy from having used
treatments in the past that just didn't work at all,
or perhaps even exacerbated things. One of the sources of
(02:17):
strength that Rena was able to draw upon during this
difficult time. Was her mindfulness practice something that we're going
to ask about for sure in our interview today. And
she has also started sharing with others and putting her
journey out there online and finding that her story empowers
others as well as herself in the process. So eventually,
Rena fortunately found a doctor that understood and her soriasis
(02:40):
became more under control. So Rena had a new message
to share with her followers. Open up to your doctor
and you might be surprised what they're able to do
to help. And your story, Rena ties in perfectly with
the history that we're going to discuss today, which is
going to take us on a step by step tour
of the evolution of Sorias's Street from ancient times to
(03:01):
our modern medicines. And I am so excited to talk
to Rena today about her experience because there are a
lot of barriers for people that seek treatment, from stigma
and embarrassment to doctors who maybe aren't always that knowledgeable
about skin conditions. It is a lot to take on
as a patient and as a person. So Rena, welcome
to our skin I'm so delighted that you're here.
Speaker 2 (03:23):
Thanks for that beautiful introduction, Holly, that was perfectly summarized.
Speaker 1 (03:29):
I'm glad. I never want a misstep. It's always that
awkward thing when you're telling someone else's story while they're
sitting there. So I'm glad it all vibed right. I
would love it if you would take us back to
your first inclinations when you were like, I might actually
need to seek medical treatment for this skin condition. But
first I want to ask how did your symptoms manifest initially?
Speaker 2 (03:52):
Yeah, they actually tie in perfectly together. So, like you mentioned,
I was in high school. We were just about to
go into high school. So it was like two months
before the summer. I was in England seeing my family,
living my best life, and all I just kept thinking
about was I can't wait for the first day of
(04:13):
grade nine.
Speaker 3 (04:13):
I'm going to meet all these new people.
Speaker 2 (04:15):
I'm so excited and thinking about all the boys and
all the fun and all the things. But my skin
had a different plan. So I just remember I was
in England and I looked down at my stomach and
I had these red dots.
Speaker 3 (04:31):
They look kind of like chicken pox. I didn't know
what they were.
Speaker 2 (04:34):
I thought maybe bug bites, but as the weeks went on,
the days went on, they were growing and kind of spreading,
but they still look similar.
Speaker 3 (04:42):
So I ran to the.
Speaker 2 (04:43):
Doctor and I was like, you got to fix this.
Like I'm about to start high school. I need to
get rid of this now. So he's like, oh, you
just have chicken pox. Like it's just chicken pox, right,
he didn't know it kind of looked like it.
Speaker 3 (04:59):
I was happy. I went home, asked no questions.
Speaker 2 (05:01):
But again, as I mentioned, as the days went on,
the weeks went on, it started growing even kind of
and spreading, and the scales went from these like red
dots to these silvery scales. And eventually I went back
again and he said, oh, I think you may have psoriasis.
Speaker 3 (05:18):
I didn't know.
Speaker 2 (05:19):
There was no Google then, right. It sounded like a dinosaur.
To be honest, I had no clue how to even
spell it. I didn't know what it was, never heard
of it. All I cared about was ken you get
rid of it. And that's kind of I think when
my life changed, especially when it comes to my skin.
So that was the moment, and the line you know
(05:42):
that I always remember is I can't confirm for sure.
You know you can try this cream, and there's no cure,
but we can find a way to manage it, but
we have to wait for the dermatologist.
Speaker 1 (05:53):
That's just what a fourteen year old wants to hear too.
It's like we're gonna have a lot of guesswork ahead
of us, no problem. I wonder at that age, especially,
kids are not sharing the things that they're embarrassed or
self conscious about. Did you know anyone else that was
dealing with anything similar or did you feel like the
only person on earth that had this condition?
Speaker 2 (06:12):
Yeah, what a good question. I thought I was the
only person on earth with the condition. I kept hearing
this story, and I still hear it to this day.
Your aunt had it on her finger. She got rid
of it by wrapping it up with this, this, and this.
Your grandmother rather has eggzema as well as my father.
But to be honest, no one was really talking about it.
(06:33):
There was just that story about my aunt wrapping up
her hands, which I said, like, I still here to
this day, and she was able to get rid of it.
I have brought myself up with everything and anything, and
I still had it, So it.
Speaker 1 (06:47):
Did a Nobody knows if that was even what she
was dealing with right, like she may have had an
allergic reaction to something. There's no there's no actual science
data to put.
Speaker 3 (07:00):
But it's brutal. Yeah, it truthfully all jokes aside. I
just remember just thinking like what is this?
Speaker 2 (07:05):
And I did feel like I was the only one,
and so there was so much that went into that. Again,
like you mentioned, as a fourteen year old girl, I
was really worried about my image and fitting in looking
like everyone else. I didn't want to have this thing
or this skin that made me quote unquote different.
Speaker 1 (07:27):
Right, you did not think you were turning into an
X man. You just thought you were.
Speaker 3 (07:32):
I wish that's what happened, If I'm honest.
Speaker 1 (07:35):
By the way, I'm mistique now just funny exactly. I'm
wondering too, though you mentioned like the words that were
terrifying were like, we don't really know, we're gonna try
some things. What challenges were there in those initial treatment stages.
I know, even just like talking to a doctor as
a teenager about anything is already tough, so then to
(07:57):
be in this loop where you're having to give feedback
and time about what doesn't doesn't work and what things
feel like. What was that all like probably very scary.
Speaker 2 (08:06):
Absolutely, And I will say, although I've gotten better with
having the conversations now, it still continues to be challenging,
right to figure out what's gonna work, what's not gonna work,
because treatments need reevaluation and change often, which I didn't
know but in the beginning stages the first Okay, so
after I actually got diagnosed with SIISIS, which in itself
(08:26):
was a horrible experience because I was feeling so vulnerable
and the doctor, the dermatologists at this point, came in,
took a look at my skin, didn't really talk to me.
I waited three months for this appointment. Side note, like
three months, you know, I'm like, he's going to cure me,
or they're going to cure me.
Speaker 3 (08:42):
Wherever it is. This person is going to cure me.
Speaker 2 (08:46):
And when I went to the actual office, like I said,
he took a quick look, then brought all of his
students in.
Speaker 3 (08:53):
And they also, I guess my mom must have given
them permission.
Speaker 2 (08:56):
And I'm just sitting there right like a specimen on
the table like it was.
Speaker 3 (08:59):
I just remember feeling humiliated, embarrassed.
Speaker 2 (09:02):
I was covered at this point as well, because it
was all over my legs, now spread from my stomach
to my back to my arms, and they're all kind
of just looking at me.
Speaker 3 (09:10):
And eventually he gives.
Speaker 2 (09:11):
Me this crude cold tar and it's exactly what it
sounds like. It's like this green, kind of dark brown,
slimy paste that smells like mothballs. So you slather it
on at night. It stains everything and then you wake
up in the morning and you wipe it off with towels.
My mother had to help me, and it really smelled
(09:33):
number one, but number two, the skin didn't really clear.
I still had like so I'm you know, South Asian,
so I have more melanated, darker skin. And then I
ended up with these like light patches where the psoriasis
was everywhere. The hyperpigmentation was brutal, but it never went away.
It was still itchy all day under my clothes. All
I remember is just wanting to scratch my skin off.
(09:56):
And so the beginning parts of treatment included, you know,
something like that. I went for like light treatment like
a lot of people do. I did cortisone creams and
it was always sticky fingerprints everywhere, you know, smelling not
very good and Also I was in these clothes that
just covered every part of my body, like where this
risees showed, so that I didn't want to do gym class.
Speaker 3 (10:18):
I was.
Speaker 2 (10:18):
People are like, aren't you hot? Like I just remember
that question, aren't you feeling hot? Like no, I'm fine,
I'm fine, I'm always cold. Meanwhile, yeah, sweltery link sweltering.
It was like my favorite time of day was coming
home after school, taking off everything and going for like
a scratch fest and like it was so bad for
the skin, but I was just it was the only
(10:40):
relief I had.
Speaker 3 (10:41):
So I lived a lot of that.
Speaker 2 (10:43):
First part of my journey with just creams and potions
and anything. Nothing took it away because work for me,
I guess it's different for everyone. For me, it meant
clearing the skin completely and nothing was working.
Speaker 1 (10:55):
You have also talked before about how transformative it was
when you finally found a doctor who actually understood How
did you know? Because I think this is whether you're
dealing with a chronic condition or not. Finding that right
doctor that you click with is really really hard. How
did you know when you had found the doctor that
was right for you? What were the green flags where
(11:15):
you're like this one's different.
Speaker 2 (11:17):
Yes, that's a really good question. It's really ideal to
find the right doctor. But depending on where people live,
depending on the access they have, it might not be
possible to find the right doctor because there might not
be a choice of people around. You know, I live
in an urban center. We have dermatologists everywhere, so I
(11:38):
do have choices. But how I knew doctor yadav is
my doctor here in Toronto.
Speaker 3 (11:43):
She was different.
Speaker 2 (11:45):
She was very, very confident. So first of all we
had like an offline conversation. We were like creating a
piece together and then kind of when we finish the work,
she said to me, you know, Rena, you don't have
to live like this, Because I was like, I am
happy in my skin. I am here for it. I'm
taking care of myself. But if I have some risis,
(12:06):
it's fine. But I was uncomfortable, like I didn't have
a goal for clear skin. At that point, I had
given up. And she when she said I can help you,
something in me was like, what you can help me?
Speaker 3 (12:18):
What like are you?
Speaker 2 (12:19):
And she was so confident And that's the part of it.
I think that really worked and clicked for me. There
was that her ability to say like I want to
help you, like we will find something that works and
you don't have to feel this way, like, yes, you
found a way through, and yes you feel empowered and
okay with the way your skin is, but there's hope.
Speaker 1 (12:44):
It sounds almost like this is the first time you
really felt like taken care of by a doctor. Like
doctors are always there to take care of you, but
it's a different thing when you're like I feel taken
care of.
Speaker 3 (12:55):
Yes, that's like on the money.
Speaker 2 (12:58):
There absolutely when someone gives you that feeling of self assuredness,
she really does want to make her patients feel better
and give them a better quality of life. She takes
that extra step, And I think that is the person
I fell cared for. And yeah, scene and she understood
like it was tough, like I was having a rough time.
Speaker 1 (13:21):
One of the things that you talk about, it's like
the animating idea of all of your work is you
deserve to feel good. And it's such a simple and
basic concept, but I think for a lot of people
that's very hard to really internalize, especially when they're dealing
with a chronic condition. There's all of this weird mental
and emotional baggage that comes with it. Sometimes there's whether
(13:44):
you're conscious of it or not. People will think there's
something bad or wrong about them, or that they did
something wrong in their skincare or in their health care.
But this idea, if they could just get it into
their minds, is something to embrace, deserve to feel good.
But I want to know how that has shaped your
(14:04):
particular brand of activism.
Speaker 3 (14:06):
Ugh.
Speaker 2 (14:07):
I also found it to be such a powerful line,
hence why I put it on the website, because it
was something I didn't believe. I thought, because I was
sick and I had this skin condition, that feeling good
was beyond my reach. It was beyond what was possible
for me, and that I didn't deserve it.
Speaker 3 (14:25):
I didn't deserve this.
Speaker 2 (14:26):
Feeling of peace of ease in my body, regardless of
what my skin looked like. And so as I started
taking care of myself and opening up more about my
story online, I started to challenge what I believed what
was possible for me as an individual and as a human.
So it was really important for me to take care
(14:50):
of myself and learn how to do that.
Speaker 3 (14:53):
Even if my skin.
Speaker 2 (14:54):
Was flared, I was still deserving of a massage.
Speaker 3 (14:58):
I was still deserving going to a beach. That was
something that I wouldn't do.
Speaker 2 (15:03):
You know, if someone had a pool party or we
went on a vacation, I would go tan on the
other side of the beach because I didn't want anyone
to see me. And I had to learn to tell myself,
you deserve to be here, You deserve to be part
of this as well. You deserve to dance, you deserve
to wear these clothes like you are deserving of these
things as well. Your skin doesn't make you unworthy. Your
(15:25):
skin doesn't make you less than. What are the things
that somebody who cares about themselves, who gives a damn
about themselves would do?
Speaker 3 (15:32):
What does that look like?
Speaker 2 (15:35):
And so that started as me putting out these challenges
when I first started my page. You know a lot
of people and I don't think this is just with skin.
Will say when my skin is clear, then I will
dot dot dot, wear the shorts, go to the beach,
go to the wedding, and sandals. These like tiny little
things that maybe a lot of people don't think about.
(15:56):
I was thinking about them all the time, and so
it was starting to challenge myself. And then as I
started to feel good and see that a lot of
these barriers were only built up in my mind. Like
most people were receiving me in a good way. This
was an evolution, and so feeling good or feeling better
and giving myself the opportunity to challenge what I thought
(16:18):
I didn't deserve really helped me break into Yeah, starting
to feel good and giving myself things that would help
me feel whole and content.
Speaker 1 (16:28):
I also wonder because with any medical condition, it's for
the most part, especially something like this, that can progress
and shift. It's not like it all happens at once.
It's something that's slowly growing over time. So your brain
is sort of adjusting to you. I guess this is
the new normal, and you're not really cognizant of how
much you've given up until you like have one great
(16:50):
day and then you're like, what it could be like
this all the time. So I think that's also important
for people to remember, right, this is kind of a
mantra you need to maintain.
Speaker 2 (17:00):
Yes, like you said, there was this feeling when I
found the right treatment and my skin started to clear.
I didn't know it was possible to feel this way,
And I'm so grateful that for me that I was
open to treatment and that I was open to trying
something new, because it really has made all the difference.
Speaker 1 (17:22):
Rina, thank you so much for sharing your story with us.
When we come back, I have some history I'm going
to share with you, some of which is going to
sound very familiar. After this break, we will take a
look at siasis treatment throughout our history, starting with Hippocrates
in ancient times, running all the way through to advanced
treatments that are available today. We've covered in previous episodes.
(18:01):
Ciriasis has always been with us. The ancient Greeks were
well aware of it, although they did not call it
psoriasis for quite a while. The physician Hippocrates, who lived
around four sixty to three seventy BCE, is often credited
with being one of the first to document treatments for
skin condition that we now recognize as psoriasis. One of
(18:22):
his go to remedies was pine tar. That's right, thick, sticky,
and pungent pine tar. Pine tar has actually been used
for centuries as a topical treatment because of its supposed
ability to reduce inflammation and relieve itching. So over the
centuries it's been applied to the scalp the trunk, the limbs,
pretty much anywhere of those suffering from psoriasis, and while
(18:45):
in some cases it actually could provide some relief, it
obviously comes with some downsides. The heavy, dark substance could
also irritate some people's skin, so that is the opposite
of the desired effect, and there's that strong, lingering odor
not super pleasant. With the advent of the Industrial Revolution,
pine tar's cousin which Rina mentioned, coal tar, came into
(19:07):
the picture, and coal tar is of course thick, heavy
oil that's derived from coal. It emerged as a ciasis
treatment due to its similar anti inflammatory and anti itch properties,
and by the early twentieth century, coal tar had become
a staple in the dermatologist toolkit. So each of these
types of tars are distilled the same way from their
(19:29):
origin substances using extreme heat. Basically, if coal or wood
is burned at really really high temperatures in an absence
of oxygen, the result is a tar that can be
put into soaps, lotions, foams, other kinds of topical applications.
And actually why tars sometimes work on poriasis is not
(19:49):
still super well understood. But coal tar, as we know
from Rena's story is still recommended today by the American
Academy of Dermatologists, and the best that we can tell
is that these tars slow down skin cell growth, which
can reduce the severity of the plaques that often accompany pariasis.
But these are, after all products that also have industrial uses,
(20:13):
so they are not necessarily gentle. Side effects can be
very serious, including in some people an increased risk of
certain cancers, and some people, such as anyone who's pregnant,
is not recommended to use these kinds of treatments. So Rena,
I was a little bit shocked that the ancient Greeks
were like, yes, let's put pine tar on people. I
didn't know until working on this show that people were
(20:35):
still using col tar, and you are an example of
that today. Did you know that pine tar was in
the mix?
Speaker 3 (20:41):
I had no clue.
Speaker 2 (20:42):
I am I'm shocked, but I have used pine tar,
which is interesting.
Speaker 3 (20:47):
I feel like someone gave it to me because I
did have it. You know what, people are always like, hey,
if you tried, does have you tried?
Speaker 1 (20:52):
That's I'm shocked, like an old wives remedy that they're like,
I prepared some Yeah, apparently they're going all the way
back to Hippocrates. With that, you also mentioned some light
therapies That goes back to nineteen twenty five, when an
American dermatologist named William Gekerman discovered that combining coal tar
with ultraviolet light therapy was particularly effective in treating pariasis.
(21:16):
That method, still known as gekermann therapy, involves applying coal
tar to the skin and then exposing it to UVB light,
and that combination helps slow down rapid skin cell turnover,
which is what characterizes psoriasis. It provides significant relief to
a lot of patients, but we can't pat ourselves on
the back too much. Long before Geckerman's discovery, sunlight itself
(21:39):
was already recognized as a valuable ally in the fight
against sariasis. Ancient physicians noted that exposure to sunlight could
help alleviate the symptoms, especially if it was used in
conjunction with topical treatments. However, not everyone could afford to
spend hour sunbathing, and of course we know excessive sun
exposure has its own set of risks, including skin damage
(22:02):
and an increased risk of skin cancer. Light therapy, which
I want to ask you about because you've done It
can be used alone or in combination with topical medications
or tablets that will increase your sensitivity to UVB or
UVA light. The latter of those is prescribed for young
or more sensitive patients, and those sessions, according to our
research I've never done one can last just a few minutes,
(22:24):
and they're typically given two or three times a week
for like a six to eight week run. But the
effectiveness and options depend on a wide range of factors,
including the type of severity of psoriasis, other health conditions,
as well as any medication. So you mentioned light therapy.
Tell us about that. It sounds in theory to someone
that's not done it very nice, like, oh, you need
a sunbath, let's do light therapy. But what is it
(22:46):
actually like?
Speaker 3 (22:47):
I know, imagine, yeah, you go into this beautiful zen spot. No,
actually it's like that at all.
Speaker 2 (22:54):
So, like you mentioned, in addition to the coal tar
that I was putting on every night, now three times
a week, we were going to this light therapy. So
it's a chamber essentially, and you're in there for like
ten seconds, but I remember, to get there it would
take an hour, and to get back it would take
an hour because it was so far. So it's just
(23:14):
like going into a tanning booth, but a standing up
tanning booth. You kind of do this for ten fifteen seconds.
It wasn't a few minutes. It was very quick, and
that was that, and it works. It worked for me
at least, and it's worked for people who I've talked to.
But eventually you're just like, I don't this seems a
bit odd just to drive for a ten second stand
(23:34):
up session and come home.
Speaker 3 (23:35):
Some people bring them into their house, right, thousands of dollars,
you know.
Speaker 2 (23:39):
So for me it did help, but I got really
tired very quickly, so after the first stint I was done.
Speaker 3 (23:46):
Well.
Speaker 1 (23:46):
It's good that you mentioned that, though, because it is
a cool therapy. It does work for a lot of people,
but it doesn't mean that it's easily accessible for everybody.
You know, if you're not in a metro area, your
odds of finding one in driving distance are probably pretty low.
And the other option is to go to great personal
expense to build one.
Speaker 2 (24:05):
It's true, and not to go to the tanning booth.
Because a lot of people are going to the tanning booth.
I think it's not the same thing. It's that like
you mentioned UVB versus UVA, So right, yes.
Speaker 1 (24:16):
Don't do that, that's not your treatment. I do want
to shock you with more things, because moving into the
Victorian era, there were some very alarming treatments going on,
including diluted tinctures of arsenic and mercury that were used
to treat various skin conditions, including psoriasis. These are obviously
incredibly toxic and their use usually did more harm than good.
(24:40):
In some cases, people were even advised to inject these
very dangerous chemicals directly into their bodies. That's a stark
reminder though, of how desperate people have been over the
ages to get some relief and how limited medical knowledge
was at the time, and that combination was brutal and
probably deadly for some people. We don't really have any
(25:01):
hard data on how many people died from injecting our
snack to treat skin conditions, but I bet you it happened.
And then in the early nineteen hundreds, there was another
topical treatment that came into play called dithronol. This compound
is derived from the bark of the aerobatry and it's
found to be effective in slowing down skin cell production.
And therefore reducing the severity of plaques that develop. However,
(25:24):
it was not widely used in the United States because,
like other treatments, it could discolor the skin and stain
clothing and bedding. That's not super practical for everyday use.
As recently as nineteen fifty six, medical literature still mentioned
using mercury in topical ointments for psoriasis. We know now
that mercury is highly toxic and can cause serious health issues,
(25:46):
but even in the mid twentieth century it was one
of the few options that was really available to doctors
and patients. So throughout history there have been various unorthodox treatments,
herbal concoctions, and then my favorite, snake oil, which were
often touted as miracle cures. We use the term snake
oil today to talk about something that is a fake
medicine or like something a carpetbagger would sell you that's
(26:09):
not going to do any good and might in fact
harm you. But there are actual snake oils that work.
The snake oil concept derives from an old Chinese remedy
that made use of the black banded secret it's also
known as a Chinese water snake, and that had legit
anti inflammatory effects because Chinese water snakes have a very
high concentration of omega three fatty acids. But when that
(26:32):
remedy made its way to North America via immigration, there
were a lot of Charlatans that picked up on it,
particularly in the American West, and they started making their
own version of the Chinese cure. But they used just
about any snake they could find, including rattlesnakes. Those do
not have the same beneficial omega threes, and that is
how that term transitioned to become snake oil in our
(26:55):
lexicon as something that's worthless and possibly dangerous in terms
of health treatments. There are also, of course, indigenous tribes
that have had their own remedies, including the use of
buds from the balsam poplar that has been used to
treat soriasis in other skin conditions. And of course, today,
as Rena knows, there are a lot of changes in
(27:17):
our understanding of psoriasis. We know it's not just a
skin condition, which is how it used to be treated.
It is an autoimmune disease. This means that the body's
immune system is mistakenly attacking healthy skin cells. That's what
leads to that rapid skin cell turnover we've been talking about,
and that's what causes those characteristic red and scaly patches.
(27:38):
Here's what I wonder as I'm talking about all of this, rena.
There are so many treatments now for psoriasis that I
imagine even that becomes its own. While it's like they're
an array of things we can try. That is probably
intimidating in and of itself. Since you have a community
around this, do you find that a lot of people
are going through trial and error? And what is that
like again mentally in emotion? Is there a point where
(28:01):
some patients are just like I'm done, I'm not going
to deal with this anymore.
Speaker 3 (28:05):
Yes, I found that with myself and with others.
Speaker 2 (28:08):
It is exhausting, especially when something doesn't work and you
have so much hope. You're trying everything, You're hoping it's
going to work, and it doesn't, and then you're like,
should I bother going through the whole process of getting
something else? So, yes, people get tired, And I always say,
you know, it's okay to take a break, but don't quit, Like,
(28:29):
just try as much as you can. And I would
give that same advice to myself who went through years
and years of just giving up completely and my skin
going wild. I was like, nothing's going to work, So
what's the point. So I think people do get tired,
and there is trial and error, but take a break, rest,
give yourself a moment, and then get back on that horse,
because as I've said, for me, I've found something that works.
(28:52):
And the science is so much more sophisticated than it was,
you know, years ago. So as you educated me with today,
I was like, I'm still happy I wasn't born in
the twenties.
Speaker 1 (29:04):
Yeah, right, And the thing is too we mentioned and
we know topical treatments don't address the root cause of psoriasis, right.
They may help with your skin, but you're still having
an autoimmune system. This is where, of course, a much
newer treatment comes in, which is biologics. Biologics are a
class of drugs that was first approved in the US
(29:26):
by the FDA in the early two thousands, and they
target specific parts of the immune system involved in the
inflammatory process, and by inhibiting certain immune responses, biologics can
significantly reduce the symptoms of psoriasis and improve quality of
life for a whole lot of patients. Biologics have obviously
revolutionized the entire treatment possibilities for moderate and severe psoriasis.
(29:51):
They are typically administered by injection or intravenous infusion, and
they can actually provide some very long lasting relief. And
as we reflect on the h of soriasis treatments, it
is clear we have come a very long way from
the days of pine tar and arsenic thankfully, and other
toxic chemicals. Our understanding of the condition has deepened and
with it our ability to manage it effectively. And while
(30:14):
there is still no cure, advances in medical research continue
to bring hope to millions of people living with this
challenging condition. So I think the most important takeaway from
all of this is that we really have come very
very far right. Treatment is way more effective than it
was in the early days, no more arsenic. So if
(30:34):
someone has been reluctant to open up to a doctor
and see what treatments are available, now is a great
time treating a chronic skin condition. I know we've said
it a million times, but it bears repeating. It's not
a straight line, as our dip into history shows, but
it is really amazing to know that there's a lot
that's been done to make living with poriasis so much
(30:55):
more doable and so that people can embrace the idea
that they deserve to feel good. There are things you
can do every day to feel better emotionally and physically,
and you just had to find what works for you.
So I want to come back to that idea arena
of you deserve to feel good, because we all deserve that.
But that is also not a straight line. What got
(31:16):
you through those times where treatment wasn't working or you
just weren't feeling good about the whole.
Speaker 2 (31:21):
Journey, you know, I just went through that phase in
December recently, on New Year's Eve. I yeah, my treatment
just wasn't working and I had to And now again
I've found good treatment because I went back. I didn't
give up. But during that really hard time, I noticed
how everything I intellectually knew just went out the window.
(31:41):
I didn't follow any of my own advice. I just
felt hopeless. I laid in bed, I was swollen, I
was sad, and what helped me was asking for help,
going to my therapist, which I'm lucky enough to have,
asking my family for support, telling my friends I'm struggling.
Speaker 3 (31:58):
I really need someone here with me, and.
Speaker 2 (32:00):
Then also telling myself it's okay, like having some self compassion.
It's okay that you're here and you're having a hard time.
You're not doing the quote unquote things you should be
doing or could be doing.
Speaker 3 (32:14):
It's okay to.
Speaker 2 (32:14):
Have a moment and be sad and grieve the pain
and give yourself what you need. But I said to myself,
you know, after a week of this, you're not going
to pack your bags and move into the space. It's
time to get back on the horse, like get the
support that you need, like I said, and also go
(32:35):
back to the doctor and talk to her about what
is possible. And we were able to find something that worked.
I was nervous because I'm like, oh, I'm going to
go right back to where I was. But yes, it's
it's truly learning to ask for help and support and
knowing that I don't have to do it alone. That's
changed my life.
Speaker 1 (32:54):
Rina, you are an angel and your story is so powerful.
If you could send one mess to listeners who might
be grappling with their own diagnosis, what would that be.
Speaker 2 (33:06):
I think everything that we've said through this, but it
would be that there is a hope and that there
is change, and although right now you may not know
what direction you need to go, it is possible to
find the care. Just don't give up and be open
to what might be possible for you.
Speaker 1 (33:23):
I love it. Thank you again so much. You're such
a delight.
Speaker 3 (33:26):
Thanks Hollie, love to convo.
Speaker 1 (33:33):
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 with your friends. You can also listen and follow
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