October 21, 2025 • 20 mins
A white patch on the skin shouldn’t erase someone’s story—or their options. Live at the Science of Skin Summit, Dr. Seemal Desai breaks down what vitiligo really is: an autoimmune skin disease, not a cosmetic issue or something contagious. We trace his family’s journey from the anxiety of early PUVA treatments to today’s advanced options—topical ruxolitinib, phototherapy, oral JAK inhibitors, and promising IL-15–blocking biologics.
We bust myths, explain autoimmune links, and share practical tips for care—sun protection, gentle skincare, and avoiding skin trauma. Dr. Desai also tackles stigma and insurance barriers that mislabel vitiligo as cosmetic, spotlighting the Global Vitiligo Foundation’s advocacy for access and support.
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Episode Transcript
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SPEAKER_01 (00:00):
In many communities and cultures around the world,
vitiligo is still viewed as avery socially stigmatizing and
ostracizing condition.
Uh, was something called PUVAtherapy, which was you take a
pill and then you go in atanning booth to stimulate your
color, and it worked for awhile.
And then over time, his diseasejust relapsed and got vitiligo
is a cosmetic thing.
(00:20):
So that's out there.
Uh no.
False, false, false.
Vitiligo is not simply cosmetic.
SPEAKER_00 (00:26):
The second myth is that Welcome to Dermot Trotter,
Don't Swear About Skin Care,where host Dr.
Shannon C.
Trotter, a board-certifieddermatologist, sits down with
fellow dermatologists andskincare experts to separate
fact from fiction and simplifyskincare.
Let's get started.
SPEAKER_02 (00:46):
Welcome to the Dermot Trotter Don't Swear About
Skin Care Podcast.
It's an exciting episode becausewe're actually doing this live
at the Science of Skin Summithere in Austin, Texas.
I'm Dr.
Shannon C.
Trotter, board certifieddermatologist, and I'm here with
a special guest today, Dr.
Samal Desai.
Welcome to the podcast, Dr.
Desai.
SPEAKER_01 (01:05):
Thank you so much for having me, Shannon.
It's an honor to be here,especially to do this live.
So I'm looking forward to thenext several minutes spending
time with you.
SPEAKER_02 (01:13):
Well, we want to touch on a topic that I know has
a personal side for you.
Yes.
Vitiligo.
I wanted you to talk more withour audience about your personal
connection to Vitiligo andreally just explain what it is.
Because I'm sure there's somepeople scratching their heads
out there saying, I've nevereven heard of this before.
SPEAKER_01 (01:28):
Yeah, and I want to just first of all thank you for
giving Vitiligo this platform tobe able to really reach out to
the public and talk about this.
Vitiligo is an autoimmune skindisease.
It is not a cosmetic condition.
I just want to preface by sayingthat first and foremost.
SPEAKER_02 (01:45):
Yeah.
SPEAKER_01 (01:46):
Vitiligo is a disease where your body's own
immune cells attack and kill thecells in our body that give us
our own natural skin color.
Those cells are calledmelanocytes.
And vitiligo is the same diseasethat Michael Jackson suffered
from, that other famouscelebrities like Winnie Harlow
and John Hamm and many othershave suffered from.
(02:07):
The other thing I want to beginby saying is that Vitiligo is
not a rare disease.
The prevalence of vitiligo isquite high.
We recently published a paperthat in the US, up to 3 million
individuals are affected withVitiligo.
So when you see someone who'sgot white patches, particularly
if they're a darker skin toneindividual, you've probably seen
someone at a grocery store andon an airplane or on a bus ride.
(02:30):
That is what vitiligo is, whereyou lose your own color.
Now, with that comes lots ofother issues, which we can dive
into.
But the most important thing tostart off with is autoimmune
skin disease.
An award-certified dermatologistcan help with discussing
treatment options and especiallywhat's new on the horizon.
SPEAKER_02 (02:48):
I'm glad you point that out because I'm sure
there's people listening thatthought, I may have seen
somebody with that, but I had noidea what it was or what it was
even called.
And for you, there is thatpersonal connection to Vitiligo
as well.
Am I right?
SPEAKER_01 (03:00):
There is.
And actually, Vitiligo is thereason I became a dermatologist,
now specializing in pigmentarydiseases.
In the mid-1980s, my youngerbrother was diagnosed with
vitiligo.
We were, we grew up in Atlanta,Georgia.
I have a younger brother who'snow a physician and practice in
Atlanta and doing very well inhis late 30s, early 40s.
But in the mid-1980s, he wasdiagnosed with vitiligo.
(03:24):
And at that time, for our familyand for my parents in
particular, it was a devastatingtime.
A disease that has always hadsignificant psychological and
sociological burden.
In many communities and culturesaround the world, vitiligo is
still viewed as a very sociallystigmatizing and ostracizing
(03:46):
condition.
And in many parts of the world,vitiligo in the mid-1980s was
viewed as a contagious disease,kind of like leprosy.
And fast forward to 2025, we'vemade lots of progress to dispel
those horrible myths.
But we're still at a point wherevitiligo in many cultures,
particularly in communities ofcolor, Indian subcontinent,
(04:07):
Southeast Asia, Africa, andLatin America, et cetera, where
vitiligo is still oftentimesviewed as a very uh stigmatizing
condition.
Uh, for example, you havesomeone in your family with
vitiligo, oh, we don't want toget married to someone in that
family.
Uh, job opportunities,educational opportunities,
(04:27):
social standing.
And so for my family, it was avery traumatic journey.
And I remember the stress andanxiety my patient my parents
felt with my brother as apatient.
And so I've kind of beeninvolved with dermatology since
I was 11 years old and evenyounger.
And so now, fast forward, that'sreally why I've been able to
(04:50):
focus my career on pigmentarydisorders.
And I'm happy to say that we'reat a place now with this disease
that I've never been in myentire career, and there's so
much of hope on the horizon.
SPEAKER_02 (05:00):
Well, I do want to touch upon treatment, but one of
the things I wanted to have youhighlight is just how it really
impacts the person.
And maybe you can speak to howit made your brother feel
because you mentioned thatsocial stigma and how it impacts
people's ability to function insociety.
One of the things that a friendof mine who said that her
parents are from India, yeah,and she said that one of the
(05:20):
dentists developed Vitiligo.
And she said that her parentsactually didn't trust the
dentist's skill set anymore toperform dental procedures when
that vitiligo developed,thinking that somehow is a
reflection of their skill set orwho they were as a person.
SPEAKER_01 (05:34):
You know, I'm devastated to hear that, but I'm
not shocked.
Uh, I'm not at all surprised.
And, you know, for my youngerbrother at the time, I will
admit, when he first gotdiagnosed, I'm sure if he was
here and we would ask him, hereally didn't care about it.
But sensing the householdanxiety, the tension, the uh the
(05:56):
tears, the unpredictable nature,uh certainly affected him
psychologically.
His treatments at the timeinvolved going to a tanning
booth because that's all therewas at the time uh was something
called PUVA therapy, which wasyou take a pill and then you go
in a tanning booth to stimulateyour color.
And it worked for a while.
And then over time, his diseasejust relapsed and got worse.
(06:18):
And now, if you see him, he'sthree shades lighter than me.
He's fully depigmented.
The vitiligo is he has no normalpigment of an Indian skin tone
individual like me left.
He's come to terms with it, ourfamilies come to terms with it,
but uh, I know for a fact thathe has had comments like that
(06:39):
made to him.
Recently, he posted on hissocial media a comment that was
made to him by a patient in thehospital as well, uh, saying,
Oh, I don't want you to treatme.
And he was a he's a hospitalist.
I don't want you to treat mebecause I don't want to get
that.
Or um someone staring at hisskin and saying, Oh, is that
contagious?
SPEAKER_00 (06:58):
Wow.
SPEAKER_01 (06:58):
Or I do remember him very clearly pointing out uh
people being concerned aboutshaking his hands because they
they thought that they weregonna get it, you know, it was
it was something that could bepassed along.
SPEAKER_02 (07:08):
So we have a lot of work to do.
SPEAKER_01 (07:09):
We have a lot of work to do.
And actually, to be honest,platforms like this and talking
with you as part of that.
So and and the Global VitiligoFoundation, by the way, I have
to plug them because I'm thepresident now of the Global
Vitaligo Foundation, which isthe largest international
organization dedicated toVitiligo.
And for anyone listening, go tothe Global Vitiligo Foundation
website.
There are free patient resourcesand amazing patient support
(07:32):
group resources, mostimportantly, to get support and
connect with individuals.
SPEAKER_02 (07:37):
Well, that kind of leads us into the treatment
conversation because you talkeda little bit about what
resources your brother had.
So I wanted you to maybe take alittle historical dive as to
kind of where we were withtreatment with Vitiligo, sort of
kind of where we are, and thenof course, what's in store for
the future.
SPEAKER_01 (07:53):
Great question.
And, you know, I what I will sayis now more than ever, if you
are someone suffering fromVitilIGO, you should feel hope
and optimism that there arethings that we can do to change
that.
I have, if we did this podcast,Shannon, 10 years ago, I would
say I'm hopeful, but I don'thave anything new to tell you
(08:13):
right now.
Now I can tell you we havefinally an FDA-approved topical
treatment, which is calledRuxolitonib.
My conflict of interest, I wasinvolved in those studies and we
published them in the NewEngland Journal of Medicine.
But we have an FDA-approvedtreatment, which is a cream.
We have new advances inphototherapy now.
So we don't send people totanning booths anymore.
(08:34):
We do the medical treatments inour offices.
I know you do this as well inyour practice.
Uh, we have especially now threeclinical studies happening at
the exact same time on oraltreatments for Vitiligo called
oral jack inhibitors.
And I, if I were willing to bet,and let if we were in Las Vegas
and we needed to go gamble, Iwould bet that by 2026, at some
(08:58):
point next year, we will have atleast one, if not three,
FDA-approved treatments, whichare pills for VitilIGO.
Are they going to be overnightfixes?
No.
Do we have anything to rapidlyget the color back?
No.
Everything we do in Vitiligostill will take time and
patience.
The point is we finally havetools, and then we can go to our
(09:22):
insurance companies and advocateto get those tools approved.
And I could spend a lot of timewith you talking about the
challenges there as well,because there are unfortunately
insurance companies in thiscountry that have reclassified
Vitiligo as cosmetic.
SPEAKER_02 (09:35):
That's unbelievable.
SPEAKER_01 (09:36):
It's unbelievable, it's a travesty, it's a tragedy.
I'm fighting it tooth and nail.
I want every patient out therelistening to get involved with
advocacy with your insurancecompanies, with your
legislators.
There is no reason it'sunacceptable that a skin disease
that's autoimmune, that hascomorbidities, is being told
(09:56):
that it's cosmetic.
And having the research forthese new treatments, I think,
is going to really help us.
So oral treatments are on theway, you new treatments in UV
light, new topical creams are onthe way.
And then finally, there's also abiologic that's being studied
right now.
And so that blocks somethingcalled interleukin-15.
Uh, and not to get too science-yabout it, but this is a
(10:19):
biologic.
Just like you see commercialsfor biologics for psoriasis and
eczema.
Maybe one day we'll have abiologic for vitiligo where you
give yourself one monthly shot,let's say, and it keeps your
disease away.
So I am so optimistic.
And and I am also, by the way,optimistic that one day,
hopefully in my lifetime, wewill have a cure for this
disease.
SPEAKER_02 (10:40):
I mean, that's got to give people hope out there
that are just thinking about it,that are struggling with it.
Or, like you mentioned, they maynot even actually know they have
it or appreciate that it's goingon.
So, you know, we've talked abouta little bit about the
treatment, the journey, and thelast kind of part here, you
know, with the podcast.
I wanted to ask you more aboutif somebody has vitiligo, are
there other things they shouldbe thinking about that they
(11:01):
should be worried about thatthey might actually have?
Because I think a lot of peoplethink, again, a lot of skin
diseases people assume are justskin deep.
And we know so much more,obviously, about psoriasis and
other things we treat.
How do you approach that withyour patient if you think they
have vitiligo?
What else are you worried aboutor working them up for?
SPEAKER_01 (11:15):
So glad you asked that.
And that question is reallyimportant as we continue to
paint the narrative about thisbeing an autoimmune condition.
Vitiligo is associated withother autoimmune conditions.
I do screen all of my patientsfor thyroid disease.
I screen them for vitamin Ddeficiency, I screen them for
iron deficiency.
And then depending on theirsymptoms and family history or
(11:38):
personal history, even thingslike rheumatoid arthritis,
certain types of diabetes,particularly type one, uh,
pernicious anemia, which is atype of anemia where your blood
count gets lowered.
But we do check lab work, we dotake detailed medical history,
and it's very important torealize that these underlying
systemic diseases may be withina family who, and you may have
(12:02):
someone who doesn't havevitiligo.
So, for example, I have a lot ofpatients who say, Why did I get
this?
No one in my family has it.
Then you take a family historyand you realize, okay, well,
they had a grandmother with type1 diabetes, and then their
sister has thyroid disease.
Neither the grandmother or thesister have vitiligo, but the
patient has vitiligo, butdoesn't have thyroid disease or
diabetes.
(12:22):
And so within that one familytree, three different autoimmune
diseases, each showing up adifferent way, but in that same
genetic family.
So we do a lot of that.
And then the other thing I dowant to mention, which we don't
talk about as much.
So I'm really glad you'reletting me do this.
We have comorbidities, but wealso have other skin conditions
that co-localize with vitiligo,like lupus, lycanplantis,
(12:48):
alopecia ureata, so types ofhair loss and rashes that can
also show up in our vitiligopatients.
So really important to know.
SPEAKER_02 (12:55):
And I think patients would, you know, appreciate that
because they're just thinking,this is, oh, it's just affecting
my skin, right?
SPEAKER_01 (13:00):
It's just color or something.
SPEAKER_02 (13:02):
Could it be associated with something else?
Or, like you said, could it justbe shared amongst family
members?
And for somebody with vitiligo,if they're thinking about, you
know, kind of circling back totreatment, what do you talk
about with them about skin care,some protection?
What other measures do you kindof include in their treatment to
make sure that's kind ofcomprehensive, in addition to
actually tackling that vitiligoand trying to reverse it?
SPEAKER_01 (13:22):
Oh, that's so good.
Uh yes.
So, number one first andforemost is uh photo protection
and sunscreen is a must.
You never want to have asunburn.
Well, as both of us asboard-certified dermatologists,
we don't want anyone to have asunburn.
No one wants a sunburn.
But if you're a vitiligopatient, a sunburn can be
devastating, extremely painful.
Remember, your skin doesn't haveits own color.
(13:43):
Our color is our own naturaldefense in many ways against
sunlight and sun damage.
And so these vitiligo patientsare more prone to sunburn, broad
spectrum sunscreen,reapplication constantly,
especially if you're gonna be onthe sun, every two hours at
minimum, if not more frequently,is critical.
And I tell patients that.
Some people say, Oh, well, Ijust read on a blog, I should go
(14:03):
out and get some sun.
I should go, I should go layout.
And my answer is you're notgonna lay out.
If you need to do a little bitof sun exposure, 10 to 15
minutes three times a week, iswhat I recommend reasonable
exposure.
The minute your skin starts toget pink, you're out of that
sunlight.
The challenge with lettingpatients do that is no one ever
(14:26):
is precise about 10 to 15minutes.
I mean, listen, I'm adermatologist, you're a
dermatologist.
Sometimes we forget to do stuff,right?
SPEAKER_02 (14:32):
Like don't like to admit it, but we forget.
SPEAKER_01 (14:34):
Right.
I don't like to admit it, but Ido.
Like I was on a recent trip toMexico with my family, and it
was two hours and I was in thepool, and an hour later, I'm
like, oh man, I forgot toreapply my sunscreen.
And I'm a dermatologist.
So, but yes, and then in termsof skincare, uh gentle skincare,
uh, I don't recommend aggressivescrubs, I don't recommend
ablative cosmetic treatments.
(14:55):
We actually published a paperwhere uh laser resurfacing, uh
uh micro-needling, those things,you'd want to be cautious.
Anything that's gonna damage orburn or traumatize the skin
could potentially spread yourvitiligo.
So then people ask me, well, canI not get a facial?
Light things, I'm stillreasonable and I let patients
(15:16):
do.
Light chemical peel, a facial,uh a laser hair removal.
Yes, you can do it, but again,slight risk of it spreading
because you're giving heat anddamaging those cells.
So I think you really have tocustomize the approach, and
that's kind of what we try to doat our center in Dallas.
SPEAKER_02 (15:32):
And I think patients understand that that's
important.
If you have it alligo, you mightneed a little special care, but
may not just think of it rightaway.
And yes, as you heard, asdermatologists, we do sometimes
forget uh to reapply.
So we're all human.
I think that's what's importantto point out.
Even as dermatologists, we'renot perfect, although we might
proclaim to be at times.
That's right, that's right.
So I I will, you know, kind ofyou know, talk more about, you
(15:54):
know, being at this, you know,the summit here, social media is
obviously a big, big thing.
We talked about some of thestigma associated with vitiligo.
Are there any types of likemyths or just sort of like crazy
claims or outrageous claimsyou've seen on social media that
you think kind of just you wantto really emphasize aren't true?
Be the myth buster for us here.
SPEAKER_01 (16:12):
Oh, yeah, I love busting myths.
Okay, the first myth I will wantto bust is that bitiligo is a
cosmetic thing.
So that's out there.
Uh no.
False, false, false.
Vitiligo is not simply cosmetic.
The second myth is that uhcertain foods can make bitiligo
worse.
I get a lot of questions aboutoh, should I change my diet?
(16:34):
Um, I get a lot of questions,oh, I have leaky gut.
That's causing my vitiligo.
We have no data to prove that.
Now, 10 years from now, couldcould we be doing an episode of
your podcast and I may change myanswer?
Yes.
But right now, we don't have anydata that shows foods make
vitiligo worse.
What do I tell my patients?
I say balanced healthy diet.
(16:55):
You know, the Mediterraneandiet, there's a reason it works.
It's a good diet.
So if people ask me for reallyspecifics, I say Mediterranean
or balanced healthy diet.
The other myth is that oh,creams don't work.
Uh yeah, why why is my doctorkeep giving me a cream?
Now that we have Ruxolitinib,especially, and and by the way,
but even before Ruxalitin, whenwe had off-label uh calcinurine
(17:18):
inhibitors or topical steroids,they did help.
Uh, but now that we haveRuxolitinib and new stuff in
development, creams can help.
And then I would say the the thefinal myth is that uh there
there is this sense that forpatients who are suffering from
vitiligo, that uh you you needto seek treatment right away in
(17:47):
order to see improvement.
Oh, I've had meaning, in otherwords, oh, I've had it for 10
years.
Right.
No point in me trying to get anytreatment.
SPEAKER_02 (17:54):
Really common.
Really common, right?
SPEAKER_01 (17:55):
Oh, I've had it for 10 years.
No one told me I could doanything, so I've just let it be
and I don't have anything I cando.
I never withhold treatment forsomeone, no, if they've had
disease for a long time.
Doesn't matter how long you hadit, if you want to try to
improve it, we will improve it.
SPEAKER_02 (18:10):
I love that.
I think that's such a positivespin, you know, for patients
that probably historically, ifthey've had it that long,
thought there was nothing, nohope.
And I think it's always great togive patients, you know, that
sense of optimism that we'regonna try and see what we can
do.
Yeah.
So just to kind of we wrap uphere, conclude, if you have a
patient that comes in, you know,that has Vitiligo, what would be
(18:30):
sort of your elevator pitch orsay to them about their disease
and where you think you can gofrom here?
SPEAKER_01 (18:37):
What I would say is that you have an autoimmune skin
disease that is one that shouldnot give you the feeling of
total despair.
You have a disease that is beingstudied, that's being
researched, that's beinginvested in, that's being
recognized, and that you areseen.
(18:57):
You're seen for your normal skintone, quote unquote, you're seen
for your spots, quote unquote.
And that the vitaligo should notdefine your beauty or how you
feel or viewed by others.
This disease, no matter if youwant treatment or you don't want
treatment, is one that requiresrespect and care and diligence.
(19:19):
And that we, as thedermatologists, are the true
experts as board-certifieddermatologists, FAAD experts to
help treat your condition andseek the care that you deserve.
SPEAKER_02 (19:31):
What a great way to kind of end our conversation.
I mean, I really want to thankyou, Samal, for coming on,
sharing your expertise, thatpersonal history, you know, with
your brother that inspired youto be sitting here with us here
today.
Thank you.
I just think that's utterlyamazing.
He's got to be so proud to seewhat you're doing.
SPEAKER_01 (19:46):
And it's really great for my family.
They they they were all at ourrecent AAD meeting where I
concluded my term as president.
You were there.
And it's great for everyone tosee, you know, our family's
devotion to this.
But I also want to just saythank you to you because it's
platforms like this that arehelping to spearhead the message
to the public.
And you all, as a public, areour patients.
And so I'm so excited and proudof you for everything you're
(20:08):
doing, Shannon.
And I know your listeners areloving every episode.
SPEAKER_02 (20:11):
Well, thank you.
I appreciate that.
I also want to thank the Scienceof Skin Summit for allowing us
to do this podcast here today.
It's been fantastic to connectwith you here again.
If you love this episode, pleasehit like and subscribe, of
course, and stay tuned for thenext episode of Dermot Trotter.
Don't swear about skincare.
SPEAKER_00 (20:29):
Thanks for listening to Dermot Trotter.
For more about skincare, visitdermittrotter.com.
Don't forget to subscribe, leavea review, and share this podcast
with anyone who needs a littleskincare sanity.
Until next time, stay skinsmart.
In many communities and cultures around the world,
vitiligo is still viewed as avery socially stigmatizing and
ostracizing condition.
Uh, was something called PUVAtherapy, which was you take a
pill and then you go in atanning booth to stimulate your
color, and it worked for awhile.
And then over time, his diseasejust relapsed and got vitiligo
is a cosmetic thing.
(00:20):
So that's out there.
Uh no.
False, false, false.
Vitiligo is not simply cosmetic.
SPEAKER_00 (00:26):
The second myth is that Welcome to Dermot Trotter,
Don't Swear About Skin Care,where host Dr.
Shannon C.
Trotter, a board-certifieddermatologist, sits down with
fellow dermatologists andskincare experts to separate
fact from fiction and simplifyskincare.
Let's get started.
SPEAKER_02 (00:46):
Welcome to the Dermot Trotter Don't Swear About
Skin Care Podcast.
It's an exciting episode becausewe're actually doing this live
at the Science of Skin Summithere in Austin, Texas.
I'm Dr.
Shannon C.
Trotter, board certifieddermatologist, and I'm here with
a special guest today, Dr.
Samal Desai.
Welcome to the podcast, Dr.
Desai.
SPEAKER_01 (01:05):
Thank you so much for having me, Shannon.
It's an honor to be here,especially to do this live.
So I'm looking forward to thenext several minutes spending
time with you.
SPEAKER_02 (01:13):
Well, we want to touch on a topic that I know has
a personal side for you.
Yes.
Vitiligo.
I wanted you to talk more withour audience about your personal
connection to Vitiligo andreally just explain what it is.
Because I'm sure there's somepeople scratching their heads
out there saying, I've nevereven heard of this before.
SPEAKER_01 (01:28):
Yeah, and I want to just first of all thank you for
giving Vitiligo this platform tobe able to really reach out to
the public and talk about this.
Vitiligo is an autoimmune skindisease.
It is not a cosmetic condition.
I just want to preface by sayingthat first and foremost.
SPEAKER_02 (01:45):
Yeah.
SPEAKER_01 (01:46):
Vitiligo is a disease where your body's own
immune cells attack and kill thecells in our body that give us
our own natural skin color.
Those cells are calledmelanocytes.
And vitiligo is the same diseasethat Michael Jackson suffered
from, that other famouscelebrities like Winnie Harlow
and John Hamm and many othershave suffered from.
(02:07):
The other thing I want to beginby saying is that Vitiligo is
not a rare disease.
The prevalence of vitiligo isquite high.
We recently published a paperthat in the US, up to 3 million
individuals are affected withVitiligo.
So when you see someone who'sgot white patches, particularly
if they're a darker skin toneindividual, you've probably seen
someone at a grocery store andon an airplane or on a bus ride.
(02:30):
That is what vitiligo is, whereyou lose your own color.
Now, with that comes lots ofother issues, which we can dive
into.
But the most important thing tostart off with is autoimmune
skin disease.
An award-certified dermatologistcan help with discussing
treatment options and especiallywhat's new on the horizon.
SPEAKER_02 (02:48):
I'm glad you point that out because I'm sure
there's people listening thatthought, I may have seen
somebody with that, but I had noidea what it was or what it was
even called.
And for you, there is thatpersonal connection to Vitiligo
as well.
Am I right?
SPEAKER_01 (03:00):
There is.
And actually, Vitiligo is thereason I became a dermatologist,
now specializing in pigmentarydiseases.
In the mid-1980s, my youngerbrother was diagnosed with
vitiligo.
We were, we grew up in Atlanta,Georgia.
I have a younger brother who'snow a physician and practice in
Atlanta and doing very well inhis late 30s, early 40s.
But in the mid-1980s, he wasdiagnosed with vitiligo.
(03:24):
And at that time, for our familyand for my parents in
particular, it was a devastatingtime.
A disease that has always hadsignificant psychological and
sociological burden.
In many communities and culturesaround the world, vitiligo is
still viewed as a very sociallystigmatizing and ostracizing
(03:46):
condition.
And in many parts of the world,vitiligo in the mid-1980s was
viewed as a contagious disease,kind of like leprosy.
And fast forward to 2025, we'vemade lots of progress to dispel
those horrible myths.
But we're still at a point wherevitiligo in many cultures,
particularly in communities ofcolor, Indian subcontinent,
(04:07):
Southeast Asia, Africa, andLatin America, et cetera, where
vitiligo is still oftentimesviewed as a very uh stigmatizing
condition.
Uh, for example, you havesomeone in your family with
vitiligo, oh, we don't want toget married to someone in that
family.
Uh, job opportunities,educational opportunities,
(04:27):
social standing.
And so for my family, it was avery traumatic journey.
And I remember the stress andanxiety my patient my parents
felt with my brother as apatient.
And so I've kind of beeninvolved with dermatology since
I was 11 years old and evenyounger.
And so now, fast forward, that'sreally why I've been able to
(04:50):
focus my career on pigmentarydisorders.
And I'm happy to say that we'reat a place now with this disease
that I've never been in myentire career, and there's so
much of hope on the horizon.
SPEAKER_02 (05:00):
Well, I do want to touch upon treatment, but one of
the things I wanted to have youhighlight is just how it really
impacts the person.
And maybe you can speak to howit made your brother feel
because you mentioned thatsocial stigma and how it impacts
people's ability to function insociety.
One of the things that a friendof mine who said that her
parents are from India, yeah,and she said that one of the
(05:20):
dentists developed Vitiligo.
And she said that her parentsactually didn't trust the
dentist's skill set anymore toperform dental procedures when
that vitiligo developed,thinking that somehow is a
reflection of their skill set orwho they were as a person.
SPEAKER_01 (05:34):
You know, I'm devastated to hear that, but I'm
not shocked.
Uh, I'm not at all surprised.
And, you know, for my youngerbrother at the time, I will
admit, when he first gotdiagnosed, I'm sure if he was
here and we would ask him, hereally didn't care about it.
But sensing the householdanxiety, the tension, the uh the
(05:56):
tears, the unpredictable nature,uh certainly affected him
psychologically.
His treatments at the timeinvolved going to a tanning
booth because that's all therewas at the time uh was something
called PUVA therapy, which wasyou take a pill and then you go
in a tanning booth to stimulateyour color.
And it worked for a while.
And then over time, his diseasejust relapsed and got worse.
(06:18):
And now, if you see him, he'sthree shades lighter than me.
He's fully depigmented.
The vitiligo is he has no normalpigment of an Indian skin tone
individual like me left.
He's come to terms with it, ourfamilies come to terms with it,
but uh, I know for a fact thathe has had comments like that
(06:39):
made to him.
Recently, he posted on hissocial media a comment that was
made to him by a patient in thehospital as well, uh, saying,
Oh, I don't want you to treatme.
And he was a he's a hospitalist.
I don't want you to treat mebecause I don't want to get
that.
Or um someone staring at hisskin and saying, Oh, is that
contagious?
SPEAKER_00 (06:58):
Wow.
SPEAKER_01 (06:58):
Or I do remember him very clearly pointing out uh
people being concerned aboutshaking his hands because they
they thought that they weregonna get it, you know, it was
it was something that could bepassed along.
SPEAKER_02 (07:08):
So we have a lot of work to do.
SPEAKER_01 (07:09):
We have a lot of work to do.
And actually, to be honest,platforms like this and talking
with you as part of that.
So and and the Global VitiligoFoundation, by the way, I have
to plug them because I'm thepresident now of the Global
Vitaligo Foundation, which isthe largest international
organization dedicated toVitiligo.
And for anyone listening, go tothe Global Vitiligo Foundation
website.
There are free patient resourcesand amazing patient support
(07:32):
group resources, mostimportantly, to get support and
connect with individuals.
SPEAKER_02 (07:37):
Well, that kind of leads us into the treatment
conversation because you talkeda little bit about what
resources your brother had.
So I wanted you to maybe take alittle historical dive as to
kind of where we were withtreatment with Vitiligo, sort of
kind of where we are, and thenof course, what's in store for
the future.
SPEAKER_01 (07:53):
Great question.
And, you know, I what I will sayis now more than ever, if you
are someone suffering fromVitilIGO, you should feel hope
and optimism that there arethings that we can do to change
that.
I have, if we did this podcast,Shannon, 10 years ago, I would
say I'm hopeful, but I don'thave anything new to tell you
(08:13):
right now.
Now I can tell you we havefinally an FDA-approved topical
treatment, which is calledRuxolitonib.
My conflict of interest, I wasinvolved in those studies and we
published them in the NewEngland Journal of Medicine.
But we have an FDA-approvedtreatment, which is a cream.
We have new advances inphototherapy now.
So we don't send people totanning booths anymore.
(08:34):
We do the medical treatments inour offices.
I know you do this as well inyour practice.
Uh, we have especially now threeclinical studies happening at
the exact same time on oraltreatments for Vitiligo called
oral jack inhibitors.
And I, if I were willing to bet,and let if we were in Las Vegas
and we needed to go gamble, Iwould bet that by 2026, at some
(08:58):
point next year, we will have atleast one, if not three,
FDA-approved treatments, whichare pills for VitilIGO.
Are they going to be overnightfixes?
No.
Do we have anything to rapidlyget the color back?
No.
Everything we do in Vitiligostill will take time and
patience.
The point is we finally havetools, and then we can go to our
(09:22):
insurance companies and advocateto get those tools approved.
And I could spend a lot of timewith you talking about the
challenges there as well,because there are unfortunately
insurance companies in thiscountry that have reclassified
Vitiligo as cosmetic.
SPEAKER_02 (09:35):
That's unbelievable.
SPEAKER_01 (09:36):
It's unbelievable, it's a travesty, it's a tragedy.
I'm fighting it tooth and nail.
I want every patient out therelistening to get involved with
advocacy with your insurancecompanies, with your
legislators.
There is no reason it'sunacceptable that a skin disease
that's autoimmune, that hascomorbidities, is being told
(09:56):
that it's cosmetic.
And having the research forthese new treatments, I think,
is going to really help us.
So oral treatments are on theway, you new treatments in UV
light, new topical creams are onthe way.
And then finally, there's also abiologic that's being studied
right now.
And so that blocks somethingcalled interleukin-15.
Uh, and not to get too science-yabout it, but this is a
(10:19):
biologic.
Just like you see commercialsfor biologics for psoriasis and
eczema.
Maybe one day we'll have abiologic for vitiligo where you
give yourself one monthly shot,let's say, and it keeps your
disease away.
So I am so optimistic.
And and I am also, by the way,optimistic that one day,
hopefully in my lifetime, wewill have a cure for this
disease.
SPEAKER_02 (10:40):
I mean, that's got to give people hope out there
that are just thinking about it,that are struggling with it.
Or, like you mentioned, they maynot even actually know they have
it or appreciate that it's goingon.
So, you know, we've talked abouta little bit about the
treatment, the journey, and thelast kind of part here, you
know, with the podcast.
I wanted to ask you more aboutif somebody has vitiligo, are
there other things they shouldbe thinking about that they
(11:01):
should be worried about thatthey might actually have?
Because I think a lot of peoplethink, again, a lot of skin
diseases people assume are justskin deep.
And we know so much more,obviously, about psoriasis and
other things we treat.
How do you approach that withyour patient if you think they
have vitiligo?
What else are you worried aboutor working them up for?
SPEAKER_01 (11:15):
So glad you asked that.
And that question is reallyimportant as we continue to
paint the narrative about thisbeing an autoimmune condition.
Vitiligo is associated withother autoimmune conditions.
I do screen all of my patientsfor thyroid disease.
I screen them for vitamin Ddeficiency, I screen them for
iron deficiency.
And then depending on theirsymptoms and family history or
(11:38):
personal history, even thingslike rheumatoid arthritis,
certain types of diabetes,particularly type one, uh,
pernicious anemia, which is atype of anemia where your blood
count gets lowered.
But we do check lab work, we dotake detailed medical history,
and it's very important torealize that these underlying
systemic diseases may be withina family who, and you may have
(12:02):
someone who doesn't havevitiligo.
So, for example, I have a lot ofpatients who say, Why did I get
this?
No one in my family has it.
Then you take a family historyand you realize, okay, well,
they had a grandmother with type1 diabetes, and then their
sister has thyroid disease.
Neither the grandmother or thesister have vitiligo, but the
patient has vitiligo, butdoesn't have thyroid disease or
diabetes.
(12:22):
And so within that one familytree, three different autoimmune
diseases, each showing up adifferent way, but in that same
genetic family.
So we do a lot of that.
And then the other thing I dowant to mention, which we don't
talk about as much.
So I'm really glad you'reletting me do this.
We have comorbidities, but wealso have other skin conditions
that co-localize with vitiligo,like lupus, lycanplantis,
(12:48):
alopecia ureata, so types ofhair loss and rashes that can
also show up in our vitiligopatients.
So really important to know.
SPEAKER_02 (12:55):
And I think patients would, you know, appreciate that
because they're just thinking,this is, oh, it's just affecting
my skin, right?
SPEAKER_01 (13:00):
It's just color or something.
SPEAKER_02 (13:02):
Could it be associated with something else?
Or, like you said, could it justbe shared amongst family
members?
And for somebody with vitiligo,if they're thinking about, you
know, kind of circling back totreatment, what do you talk
about with them about skin care,some protection?
What other measures do you kindof include in their treatment to
make sure that's kind ofcomprehensive, in addition to
actually tackling that vitiligoand trying to reverse it?
SPEAKER_01 (13:22):
Oh, that's so good.
Uh yes.
So, number one first andforemost is uh photo protection
and sunscreen is a must.
You never want to have asunburn.
Well, as both of us asboard-certified dermatologists,
we don't want anyone to have asunburn.
No one wants a sunburn.
But if you're a vitiligopatient, a sunburn can be
devastating, extremely painful.
Remember, your skin doesn't haveits own color.
(13:43):
Our color is our own naturaldefense in many ways against
sunlight and sun damage.
And so these vitiligo patientsare more prone to sunburn, broad
spectrum sunscreen,reapplication constantly,
especially if you're gonna be onthe sun, every two hours at
minimum, if not more frequently,is critical.
And I tell patients that.
Some people say, Oh, well, Ijust read on a blog, I should go
(14:03):
out and get some sun.
I should go, I should go layout.
And my answer is you're notgonna lay out.
If you need to do a little bitof sun exposure, 10 to 15
minutes three times a week, iswhat I recommend reasonable
exposure.
The minute your skin starts toget pink, you're out of that
sunlight.
The challenge with lettingpatients do that is no one ever
(14:26):
is precise about 10 to 15minutes.
I mean, listen, I'm adermatologist, you're a
dermatologist.
Sometimes we forget to do stuff,right?
SPEAKER_02 (14:32):
Like don't like to admit it, but we forget.
SPEAKER_01 (14:34):
Right.
I don't like to admit it, but Ido.
Like I was on a recent trip toMexico with my family, and it
was two hours and I was in thepool, and an hour later, I'm
like, oh man, I forgot toreapply my sunscreen.
And I'm a dermatologist.
So, but yes, and then in termsof skincare, uh gentle skincare,
uh, I don't recommend aggressivescrubs, I don't recommend
ablative cosmetic treatments.
(14:55):
We actually published a paperwhere uh laser resurfacing, uh
uh micro-needling, those things,you'd want to be cautious.
Anything that's gonna damage orburn or traumatize the skin
could potentially spread yourvitiligo.
So then people ask me, well, canI not get a facial?
Light things, I'm stillreasonable and I let patients
(15:16):
do.
Light chemical peel, a facial,uh a laser hair removal.
Yes, you can do it, but again,slight risk of it spreading
because you're giving heat anddamaging those cells.
So I think you really have tocustomize the approach, and
that's kind of what we try to doat our center in Dallas.
SPEAKER_02 (15:32):
And I think patients understand that that's
important.
If you have it alligo, you mightneed a little special care, but
may not just think of it rightaway.
And yes, as you heard, asdermatologists, we do sometimes
forget uh to reapply.
So we're all human.
I think that's what's importantto point out.
Even as dermatologists, we'renot perfect, although we might
proclaim to be at times.
That's right, that's right.
So I I will, you know, kind ofyou know, talk more about, you
(15:54):
know, being at this, you know,the summit here, social media is
obviously a big, big thing.
We talked about some of thestigma associated with vitiligo.
Are there any types of likemyths or just sort of like crazy
claims or outrageous claimsyou've seen on social media that
you think kind of just you wantto really emphasize aren't true?
Be the myth buster for us here.
SPEAKER_01 (16:12):
Oh, yeah, I love busting myths.
Okay, the first myth I will wantto bust is that bitiligo is a
cosmetic thing.
So that's out there.
Uh no.
False, false, false.
Vitiligo is not simply cosmetic.
The second myth is that uhcertain foods can make bitiligo
worse.
I get a lot of questions aboutoh, should I change my diet?
(16:34):
Um, I get a lot of questions,oh, I have leaky gut.
That's causing my vitiligo.
We have no data to prove that.
Now, 10 years from now, couldcould we be doing an episode of
your podcast and I may change myanswer?
Yes.
But right now, we don't have anydata that shows foods make
vitiligo worse.
What do I tell my patients?
I say balanced healthy diet.
(16:55):
You know, the Mediterraneandiet, there's a reason it works.
It's a good diet.
So if people ask me for reallyspecifics, I say Mediterranean
or balanced healthy diet.
The other myth is that oh,creams don't work.
Uh yeah, why why is my doctorkeep giving me a cream?
Now that we have Ruxolitinib,especially, and and by the way,
but even before Ruxalitin, whenwe had off-label uh calcinurine
(17:18):
inhibitors or topical steroids,they did help.
Uh, but now that we haveRuxolitinib and new stuff in
development, creams can help.
And then I would say the the thefinal myth is that uh there
there is this sense that forpatients who are suffering from
vitiligo, that uh you you needto seek treatment right away in
(17:47):
order to see improvement.
Oh, I've had meaning, in otherwords, oh, I've had it for 10
years.
Right.
No point in me trying to get anytreatment.
SPEAKER_02 (17:54):
Really common.
Really common, right?
SPEAKER_01 (17:55):
Oh, I've had it for 10 years.
No one told me I could doanything, so I've just let it be
and I don't have anything I cando.
I never withhold treatment forsomeone, no, if they've had
disease for a long time.
Doesn't matter how long you hadit, if you want to try to
improve it, we will improve it.
SPEAKER_02 (18:10):
I love that.
I think that's such a positivespin, you know, for patients
that probably historically, ifthey've had it that long,
thought there was nothing, nohope.
And I think it's always great togive patients, you know, that
sense of optimism that we'regonna try and see what we can
do.
Yeah.
So just to kind of we wrap uphere, conclude, if you have a
patient that comes in, you know,that has Vitiligo, what would be
(18:30):
sort of your elevator pitch orsay to them about their disease
and where you think you can gofrom here?
SPEAKER_01 (18:37):
What I would say is that you have an autoimmune skin
disease that is one that shouldnot give you the feeling of
total despair.
You have a disease that is beingstudied, that's being
researched, that's beinginvested in, that's being
recognized, and that you areseen.
(18:57):
You're seen for your normal skintone, quote unquote, you're seen
for your spots, quote unquote.
And that the vitaligo should notdefine your beauty or how you
feel or viewed by others.
This disease, no matter if youwant treatment or you don't want
treatment, is one that requiresrespect and care and diligence.
(19:19):
And that we, as thedermatologists, are the true
experts as board-certifieddermatologists, FAAD experts to
help treat your condition andseek the care that you deserve.
SPEAKER_02 (19:31):
What a great way to kind of end our conversation.
I mean, I really want to thankyou, Samal, for coming on,
sharing your expertise, thatpersonal history, you know, with
your brother that inspired youto be sitting here with us here
today.
Thank you.
I just think that's utterlyamazing.
He's got to be so proud to seewhat you're doing.
SPEAKER_01 (19:46):
And it's really great for my family.
They they they were all at ourrecent AAD meeting where I
concluded my term as president.
You were there.
And it's great for everyone tosee, you know, our family's
devotion to this.
But I also want to just saythank you to you because it's
platforms like this that arehelping to spearhead the message
to the public.
And you all, as a public, areour patients.
And so I'm so excited and proudof you for everything you're
(20:08):
doing, Shannon.
And I know your listeners areloving every episode.
SPEAKER_02 (20:11):
Well, thank you.
I appreciate that.
I also want to thank the Scienceof Skin Summit for allowing us
to do this podcast here today.
It's been fantastic to connectwith you here again.
If you love this episode, pleasehit like and subscribe, of
course, and stay tuned for thenext episode of Dermot Trotter.
Don't swear about skincare.
SPEAKER_00 (20:29):
Thanks for listening to Dermot Trotter.
For more about skincare, visitdermittrotter.com.
Don't forget to subscribe, leavea review, and share this podcast
with anyone who needs a littleskincare sanity.
Until next time, stay skinsmart.
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