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Ep. 23: What Do You Know About Vitiligo?

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Ep. 23: What Do You Know About Vitiligo?

May 13, 2022


Dr. Tarbox: Hello, and welcome to "Skincast," the podcast for people who want to learn how to take the very best care of the skin they're in. My name is Michelle Tarbox, and I'm an associate professor of dermatology and dermatopathology in beautiful, sunny Lubbock, Texas at Texas Tech University Health Sciences Center. And joining me is . . .

Dr. Johnson: Hey, this is Dr. Luke Johnson. I'm a pediatric dermatologist and general dermatologist with the University of Utah in Salt Lake City.

Dr. Tarbox: Today, we're going to talk about a topic that can affect a certain number of patients. We're going to speak about vitiligo.

Dr. Johnson: Yes. We thought it might be a good idea to have a few episodes on some fairly common dermatologic diseases though most people still don't get these. But vitiligo affects about 1% of people, which means that if you pulled 100 random people and looked at them all, one of them would have this condition.

Dr. Tarbox: So it's actually relatively common in the general population. And if you personally don't have it, and there's nobody in your family that's experienced vitiligo, you probably know somebody in your friend circle that does. So it's something that is relatively common, and we have a lot of good information about it.

Dr. Johnson: So vitiligo is white spots showing up on the skin. And we'll talk a little bit more about it. Some people call it the Michael Jackson disease. Michael Jackson did indeed have this condition. There are other celebrities who have it as well, including Jon Hamm, the actor who played Don Draper in "Mad Men" and also does some funny stuff on "30 Rock" and so on, Rasheed Wallace, an NBA player, and Winnie Harlow, a model.

I like to talk about the celebrities who have some of these conditions because I think it just makes it a little bit more fun, and it shows that people who have these conditions can obviously still achieve great things. And also the celebrities have done a good job of bringing attention to the condition and have sometimes been good spokespeople for it.

Dr. Tarbox: Yeah. Winnie Harlow, especially, has been a great spokesperson and has embraced the unique beauty of her unique skin. I think recently there was also a Barbie doll released that had vitiligo. So I think that there's more general acceptance of the skin condition. But a lot of people want to know more about it and how to treat it if they would like.

Dr. Johnson: So in your skin, you have a bunch of different kinds of cells, like a surprising number of different kinds of cells. But the majority of them are probably keratinocytes, which are the cells that make up most of the skin that we can see from the outside. And then there are melanocytes in there, and the melanocytes are the pigment-producing cells. So they make little tiny balls of pigment called melanosomes, which they share with a bunch of different keratinocytes. And sort of the number and size and darkness of those melanosomes determines how dark your particular skin is. And also if you have a whole clump of those melanocytes together, you have a mole. And in vitiligo, your immune system attacks those melanocytes and gets rid of them, which is why you then get a pale white spot, which just has no pigment at all.

Dr. Tarbox: Now, a lot of patients want to know why this happens. And that's a great question. We don't 100% know the answer to that. We know that there are some genetics that can predispose patients to developing vitiligo. We know sometimes vitiligo will happen after intense sunburn or after a period of severe stress, but often it just comes up on its own. What do you find in your practice, Luke?

Dr. Johnson: Well, a lot of autoimmune diseases are like this, and we do consider vitiligo an autoimmune disease. So there's a certain amount that medical science understands. It's your immune system attacking a part of your body that it's not supposed to. But we don't understand why it happens. And the way I describe it to my patients is often, well, we think there's something about your genes that puts you at risk for it, and then something triggers those genes to become active. And we don't really know what that trigger is in any particular case. We like to blame viruses a lot, just like a normal viral cold or infection, potentially significant psychosocial stress or significant physical stress, like some other underlying medical condition or going through a surgery or something like that, potentially. All of those, we think can potentially trigger it.

And I think it's also important to know that even though there's a genetic component, it's common for only one person in a family to be affected. So sometimes, you know, I'll explain this, and patients will say, "Well, nobody in my family has this." And well, that's actually pretty common because it's probably, you know, 20 different genes plus some kind of triggering event that all create the perfect storm for vitiligo in a particular individual.

Dr. Tarbox: Very occasionally, certain specialized medicines can also cause vitiligo to arise. Those are typically medications that are prescribed by a physician to treat either a type of cancer or a different autoimmune condition, things like a topical medicine called imiquimod or some of the medicines that are newer injectable agents that people use for psoriasis, for example.

Dr. Johnson: And, Michelle, you mentioned that a sunburn could potentially trigger it. And we know that vitiligo expresses this phenomenon where it shows up at sites of injury. There's a special word for that in medical world. It's called koebnerization I think because Dr. Koebner must have described it well, probably back in the 1800s or something. So if people with vitiligo get, like, a big scratch on their leg or something, they might discover that that line becomes vitiliginous, as we say, it turns white. And so if you have vitiligo or know somebody who has it, then you want to watch out for injury if you can.

And also, you mentioned sunburn. So those areas of pale skin that have no pigment at all, as you might guess, they're extra susceptible to sunburn. And if they get sunburned, well, the surrounding area can then koebnerize and make the whole thing worse. So be careful about the sun to at least some degree.

Dr. Tarbox: And apparently, it was Heinrich Koebner who named up the Koebner phenomenon, if anyone was just dying to find that out.

Dr. Johnson: Not his brother Reginald Koebner.

Dr. Tarbox: Yes. Not Reginald Koebner, but Heinrich Koebner. In the 19th century, he named the phenomenon. And then I think that, you know, that koebnerization, that homing of this condition to sites of trauma explains to us why it likes to happen in some of the places where it likes to happen, like the tips of the fingers or on the knees, the skin in the groin where the clothing might rub, and then areas around the face that are touched a lot or move a lot, like the eyelids and the mouth.

Dr. Johnson: So one question might be how to treat it. I think it's important to know that this is not a medically dangerous condition. So there are some people who are very, very bothered by the appearance. And there are medical studies that can say it can significantly affect somebody's quality of life, and it should certainly be treated in those cases. There are other people who just don't care about it. And then there are other people who kind of like the way it looks, like perhaps Winnie Harlow, and they wear it loud and proud.

So treatment might not be necessary from a medical standpoint, depending on the individual's preference and that of their family, especially if they're a child. But the longer vitiligo sticks around untreated, the more likely it is to not respond to treatments in the future. So I find that I run into this with my, like, 5 and 6-year-old patients who just really don't care at all, and their family doesn't really care either because it doesn't bother the patient. But, if when that child is 14 or 15, they wish they had pigment, then everybody kind of wishes they had treated it 10 years prior. So I find that families often like to treat it for that reason.

Dr. Tarbox: Yeah. And this is a more complex thing to navigate. Now, I've actually run into this recently where I was taking care of a new patient that was a young teenager who had vitiligo, and she actually liked how unique it made her. And when we talked about it, we discussed the fact that, you know, treatment is a good idea. It's not often 100% successful. So she would likely still have some of her special, unique skin, but treating it so that most of her skin was still protected from the sun, especially here in beautiful, sunny Lubbock, Texas, was a good intermediate compromise we came to, and she felt comfortable with that. And we felt better about the fact that, you know, there was less likelihood of it hardening and becoming impossible to treat.

Dr. Johnson: For some reason, I find that a lot of people think that there is no effective treatment for vitiligo, even people in the medical community. And I'm not sure why that is. There are definitely effective treatments. One of the downsides, though, is that they take forever.

So I like to explain that treating vitiligo is a marathon, not a sprint. So if I start a patient on treatment for vitiligo, I have them come back in six months because that's about how long it takes to start noticing a difference. Hopefully, we can stop the disease process a lot faster than that, but to see repigmentation, it takes about that long.

And I think if you think about how the treatment works, that makes some sense. Most of our treatments for vitiligo work by telling the immune system to chill out, right? The immune system is overactive here. It's beating up the melanocytes. So if we use medicines that get the immune system to calm down, then around your hair follicles, you have these little stem cells and they could then stick their little heads up and look around. And if the coast is clear, they can turn into melanocytes and slowly crawl along the skin and then slowly grow a bunch of little tentacles and slowly then spread their new melanosomes to the keratinocytes and you can get repigmentation. But you can imagine how it takes them so long. I mean, their heads are so small, probably their legs are so small, they just have to crawl along. It takes forever.

Dr. Tarbox: Well, and the way that our skin repigments the location of those special stem cells is typically our hair follicles. So the areas of our body that have that greatest density of hair follicles, like our face, are more likely to repigment than areas that have fewer hair follicles or no hair follicles, like fingertips. So that's also something we discuss when we're treating patients.

Dr. Johnson: It also is something to think about for prognosis. So if somebody is hair is white in an area, it's harder to get the pigment to come back because, you know, even those hair pigment cells have been affected.

But specifically about treatment, a lot of times we'll use creams and ointments and things that you rub on the skin, like topical steroids, and, of course, dermatologists and other doctors are very familiar with these medicines and know how to use them safely. There are other topical medications as well that can work, again often by telling the immune system to calm down in a particular area, but not necessarily.

There's also a treatment called phototherapy. So I think we mentioned this before, when we've talked about some other conditions, but there is a particular wavelength of light that tells the immune system to calm down in the skin, and dermatologists have machines that produce that wavelength of light. So sort of the official way to do it is to go to a dermatologist's office and have this light shined on your skin. If you have just a small patch of vitiligo, you can use, you know, just a tiny little lamp to do it. But it's onerous. It's inconvenient. It takes about three times a week for at least, well, three to six months to see if you're getting better. Sunlight has that wavelength in it as well. But beware sunlight has a lot of other wavelengths that we are worried about, especially in vitiligo because it could sunburn the skin. So natural sunlight for 10 to 15 minutes a day is probably all right, but longer than that, you want to make sure you're careful.

Dr. Tarbox: And paying good attention to how the skin feels is a good idea. Most people who've experienced a sunburn know that you can kind of feel it when that's starting to happen. So if that's something that's occurring for you, it's a good idea to check in with your skin and protect it accordingly.

Dr. Johnson: In addition to putting medicine on your skin that tells your immune system to calm down in that area, a dermatologist or other doctor might treat vitiligo by giving you medicines by mouth, or through an injection even, that tell your immune system to just calm down everywhere on the body. As you might guess, those have a lot more potential side effects, but they're also more powerful. So we might have to use them for people with pretty extensive or rapidly progressing vitiligo.

Dr. Tarbox: And then there's other things that are kind of natural things to help support the repigmentation of the skin. One of my favorites in this category is a medicine based off of the plant, whose scientific name is polypodium leucotomos. It's fun. It sounds like a spell from Harry Potter, "Polypodium leucotomos, you are now protected from the sun." So this is actually a tropical fern that lives on the equator and has been used as a folk medicine by people who natively live in those areas for centuries to protect against sun-related illness. It's a very safe medication. It's actually so safe it's put into gummy drops for children to use. There are different manufacturers, call them Sundots or Sundailies. There's also a broadly available commercial product over-the-counter called Heliocare. We have no relationship with this company. We are not sponsored in any way. It's a good product, it's easy to find, and it doesn't have any meaningful drug interactions, and no side effects have been reported with this medication.

Dr. Johnson: There also is some medical data behind vitamin A, vitamin E, and alpha-lipoic acid for vitiligo. I think that, you know, adding the vitamins and the polypodium leucotomos, Harry Potter spell, are good things to do if you're also doing something else to treat your vitiligo. I think probably just the vitamins by themselves are not good enough to treat most people's vitiligo. So if you or somebody you know has it, your doctor might recommend those as well as some other kind of medication.

Dr. Tarbox: I totally agree. They're good supporting cast, but they're not the main characters.

Dr. Johnson: You might also want to camouflage your vitiligo, or somebody with vitiligo might want to just camouflage it, for example with makeup or something like it that is the color of their natural skin. There are a number of brands out there. Again, we're not sponsored. We just like to say names of things so you guys know what to look for. So there's one called Zanderm, for example, Z-A-N-D-E-R-M, which is basically this little marker that you just rub on your skin in the area. And unlike the markers that my children use in their coloring books, this one lasts for a longer time, probably a week or so, before washing off.

Dr. Tarbox: That's a great product. And I have a funny little anecdotal story. A different kid who had vitiligo, youngest teenager, similar age, got the Zanderm markers and figured out she could make patterns on her vitiligo. And it was kind of cool looking because she's not allowed to have a tattoo yet, she's only 12. So it's really cute that she kind of was coloring in her vitiligo with her Zanderm marker.

Dr. Johnson: That's fun. Her own canvas?

Dr. Tarbox: Mm-hmm.

Dr. Johnson: There are also some new medications coming out or that are currently in therapeutic trials that look very promising. So if you or somebody you know has vitiligo and especially if it's extensive and you've tried some stuff that hasn't worked and if you're starting to feel a little discouraged, these new medicines look pretty good. So they're not FDA approved right now, but I bet they will be in the next year or two. So there is hope.

Dr. Tarbox: So what else do people who have vitiligo have to worry about, Luke?

Dr. Johnson: Well, usually nothing, but if your immune system has decided to attack your melanocytes, it's possible that it might want to attack some other part of your body too. So rarely people with vitiligo have some other autoimmune diseases, most commonly thyroid. I want to emphasize that most people don't, but your doctor might want to check some lab work, especially if you have some other symptoms as well.

Dr. Tarbox: And then what other kinds of things do people have to worry about? Does this disease ever go away and then come back?

Dr. Johnson: Well, yes. So we talked about how your genes probably put you at risk, and you're going to keep your genes even if your treatment successfully repigments all your skin. So people who develop vitiligo unfortunately are kind of always at risk for developing it again or developing new spots. So be on the lookout. For my patients who, you know, we've pretty much repigmented them, I say, you know, "If you develop a new spot, please start treating it with the same medicines and let me know what's going on."

Dr. Tarbox: So I think that, you know, if you have any questions about vitiligo, if you're worried that you have a spot that's vitiligo, it's a good idea to seek the opinion of your physician. There are conditions that kind of mimic it and that are much more common. The most common one is a condition physicians will call pityriasis alba. But it's actually light colored spots on the skin that come from some other inflammatory condition, most commonly mild eczema, and that is not vitiligo. So sometimes people will see those lighter splotches, especially on the cheeks of young children that have sensitive skin. And that's a different condition that's much more treatable and a lot less likely to have any kind of permanence.

Dr. Johnson: Yes, that's a good point. Most pale spots on the skin are not vitiligo. And one way dermatologists tell them apart is because vitiligo is just like super pale, it's a bright white, and then other sorts of pale spots on the skin are usually not completely bereft of pigment. So they're not as bright, striking white as vitiligo is.

Dr. Tarbox: There's another condition called tinea versicolor that can also make little round, light colored spots on the skin. And that again is a treatable condition, that I believe we talked about in a different episode of this podcast, where you have a mild yeast overgrows on the skin that lightly depigments it, and that's very treatable and doesn't have any significant long-term impact.

Dr. Johnson: Well, that's vitiligo in about 15 minutes. Thanks for hanging out with us today, guys. And thanks, of course, to University of Utah for supporting the podcast, and thanks to Texas Tech for lending us Michelle.

If you like listening to us, I can hardly blame you, you can find our entire archive on Apple Podcasts in the Skincast website. You can also listen to us more talk about a lot more nerdy dermatology stuff on our other podcast called "Dermasphere." We say it is the podcast by dermatologists for dermatologists. And for the dermatologically curious, you can find that one on Apple Podcasts as well or wherever you get your podcasts. And we'll see you guys next time.