Everything You Need to Know About Vitiligo

Rebecca Dancer
·8 min read

Thanks to considerable and admirable efforts by public figures, the media, and beauty brands alike, general awareness about vitiligo is rising. The model Winnie Harlow, who has the skin condition, continues to make history: Early in 2019 she became the first model with vitiligo to be featured in the Sports Illustrated Swimsuit Issue. Cosmetics companies have also increased inclusivity, with CoverGirl and Fenty both featuring models with vitiligo in recent campaigns. As of 2020, there's even a Barbie with vitiligo. 

"Vitiligo is becoming more and more common in our offices, given the recent increase in media exposure, [because] many people didn't know exactly what they had,” New York City-based and board-certified dermatologist Dhaval Bhanusali told Allure in 2019. "It's something we see commonly in the office — every few weeks, if not more."

Still, as common as it is, much about this condition still remains misunderstood. Here, we enlist the help of dermatologists to break down the basics of vitiligo, including how to identify it, potential causes and complications, and best treatment options.

What is vitiligo?

"Vitiligo is an acquired loss of pigment with full depigmentation of patches," explains board-certified dermatologist Michele Farber of Schweiger Dermatology Group in New York City. The disorder causes the skin to lose its natural color, which results in patches of lighter skin that can appear anywhere on the head or body (though they are most common on sun-exposed areas such as the face, upper chest, backs of the hands, arms, and feet).

Although vitiligo is typically a lifelong condition, Farber says that those who have it are not born with this depigmentation. Rather, the patches of color loss develop later on and usually set in before age 20. In addition to this change of skin color, other signs of vitiligo include premature graying of the hair (on eyelashes and eyebrows, too), and loss of tissue color inside the mouth, nose, and inner layer of the eyeball (retina). This lightening of the skin and mucous membranes is usually the only symptom, although in very rare cases, vitiligo can also potentially cause hearing loss and changes in vision, Bhanusali explains.

There are also different types of vitiligo, all of which share the same underlying symptom of skin discoloration, which manifests in various ways. "Vitiligo comes in many varieties ranging from localized to universal depigmentation," Farber explains. The most common form, generalized vitiligo, refers to discolored patches that present themselves symmetrically (matching spots on left and right arms, for example) and occur on many different body parts. Segmental vitiligo occurs on only one side of the body, and the localized variety tends to contain itself in just one or a few small areas.

What causes vitiligo?

The mechanism that causes these light-skinned splotches to form has to do with melanocytes, or pigment cells. "The body attacks melanocytes in the skin, hair, eye, inner ear, and mucous membranes," explains board-certified dermatologist Heidi Waldorf, who has a practice in Nanuet, New York. "The melanocytes or pigment-producing cells in the top layer of the skin stop working in discrete areas," Farber adds.

The full causes of this attack, however, are not yet fully understood by experts, although there are a couple different hypotheses currently in consideration. "It’s thought to be complex and multifactorial," Farber explains, meaning that there are potentially multiple factors that can contribute to the development of vitiligo. "It’s either considered to be autoimmune or related to defects in melanocytes that interfere with their ability to function."

In non-medical speak, that means that either something inside the body (again, still unclear what) prompts it to attack its own pigment, or a person's melanocytes are inherently defective and unable to fully function (experts are still unclear on exactly how). In sum: There's still a lot of uncertainty about vitiligo, but everything boils down to the melanocytes.

One factor that lends itself to the former autoimmune hypothesis (AKA the body attacking its own cells) is that “vitiligo is often associated with other autoimmune diseases, either in the same patient or in that patient’s family,” Waldorf says. As such, “when vitiligo is diagnosed, it is recommended that the patient get screened for other autoimmune diseases, like thyroid disease, anemia, [and] diabetes.”

Additionally, “many people report trauma, sunburn or illness before onset, although the exact mechanisms are not well understood,” Farber adds. So, overall, vitiligo is thought to be triggered by a combination of genetics and environment — that combination, and whether or not it differs from person to person, is what still has yet to be understood.

Can vitiligo cause other complications?

Vitiligo is not life-threatening, nor is it contagious. In rare cases, as noted, it can present other complications, including loss of hearing or changes in vision.

Sadly, however, perhaps the most common side effect is psychological. "Our appearances can affect our self-esteem, our moods and emotions, and the way we interact with others," explains Evan Rieder, a board-certified dermatologist and psychiatrist in New York City, who notes that the psychological toll of vitiligo can be high, even in mild cases of skin discoloration. "Issues of self-esteem and self-confidence are common, and there may be a major impact on quality of life."

If that sounds extreme, that's because it can be — which is precisely why awareness and understanding of vitiligo are so crucial. "The connection between our appearance and our psychological health is, on the surface, fairly obvious to us all—however, the relationship is quite complex and psychologists have studied and continue to study it in depth," Rieder elaborates. Case in point: "One need not look further than remembering the last time their own self-esteem was affected by an acne flare up to understand this link," Rieder says.

Another potential complication: Increased risk of sunburn. This is because the melanocytes in our skin typically help provide some UV protection—and therefore when they become deficient or depleted, the skin is more prone to damage and burning.

"People are not used to how quickly depigmented skin will burn as compared to normally pigmented skin," Farber says. "Broad-spectrum protection will go a long way towards protecting skin, particularly because vitiligo skin is more susceptible to UV [rays]."

So, in addition to visiting a board-certified dermatologist and primary care physician (to rule out other potential autoimmune disorders), those with vitiligo would also be wise to follow a strict sun protection regimen. In addition to daily sunscreen application (and re-application), Farber advises on general "sun avoidance, like [wearing] hats and seeking shade."

What are the treatments for vitiligo?

For most mild cases, there is often no medical need to treat vitiligo. Still, it's always wise to see a board-certified dermatologist, who, as mentioned, will likely "ask about other symptoms [in order] to rule out [autoimmune] associations like thyroid disease," explains Bhanusali.  He says that there is no general course of treatment, since every case is different. "Many patients are stable for years and years, and then can have a trigger that causes disease to expand rapidly."

Treatment options for vitiligo are currently somewhat limited, although there’s hope for more on the horizon. Most recently, a topical drug called Ruxolitinib was found to effectively reverse depigmentation caused by vitiligo in a research study, although FDA approval of the drug is still a ways off. Though Phase 3 studies were anticipated to start at the end of 2020, COVID has pushed back a lot of drug trials, and therefore, according to Bhanusali, "it’s still up in the air in terms of when we will see it on the market."

For now, treatment options for vitiligo include other topical medications (usually steroids) and light therapy. "Topical treatment like steroids and maintenance with steroid-sparing creams are often first line," Farber says, noting that it depends on the extent of the vitiligo. Jeremy Fenton, also of Schweiger Dermatology Group, previously told Allure that these topicals are essentially anti-inflammatory creams that work by suppressing inflammation, but they do not work very well.

For more severe or widespread cases, laser treatments and UV therapy can be useful. However, the downsides are the monetary and time commitments — these treatments usually require patients to visit their dermatologist’s office up to three times per week on a long-term basis. An "excimer laser is the most common laser used for vitiligo," explains Farber, who says that one course of treatment can take months, with twice or thrice weekly in-office visits (though the actual appointment time is usually quick). One potential bit of good news here: "Unlike most lasers, some insurance plans have coverage for this as a medical treatment," according to Farber.

Still, it's obvious that more convenient and effective treatment options for vitiligo are desperately needed — as is much more research on the disorder as a whole.

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Originally Appeared on Allure