Let’s face it: There’s a long road ahead when it comes to fair representation in the world of wellness—but the expectation of perfection, whether it’s an air-brushed complexion or a “bikini bod” is becoming a thing of the past. Inclusive conversations are happening more and more these days, and it’s time to extend that to chronic skin conditions.
The movement to abandon full faces of makeup and social media filters has been especially meaningful for audit senior manager Samantha Kuberka, who has lived with vitiligo—a chronic autoimmune condition characterized by skin that has lost color, resulting in white patches—for most of her life1.
Vitiligo has gained more visibility and awareness in the last few years, but according to board-certified dermatologist Nada Elbuluk, MD, this often misunderstood condition is not new or rare. In fact, more than 1.5 million Americans are living with vitiligo today, including people of all ethnicities, backgrounds, and ages—although initial symptoms usually appear before the age of 301, 2, 3.
“Encouraging people to feel comfortable in their own skin is the hope.”
And yet, advocates like Dr. Elbuluk and Kuberka see a lack of education and conversation around vitiligo—and they want to change that. “Furthering vitiligo awareness even more, clarifying misperceptions, and encouraging people to feel comfortable in their own skin is the hope,” Kuberka says. To contribute to making that hope a reality, Kuberka is sharing her story, and Dr. Elbuluk is breaking down the basics when it comes to understanding, living with, and managing vitiligo. Here’s what they want you to know.
Vitiligo is more than cosmetic
Because vitiligo is recognized by depigmented skin that has lost color, many people incorrectly assume it’s just cosmetic, Dr. Elbuluk says—but it’s actually an autoimmune condition. “Part of what makes dermatologic conditions like vitiligo different from other medical conditions is that they’re visible to the world,” she says, which can create the misconception that it’s just surface-level.
In reality, vitiligo is the result of your body’s immune system attacking and destroying your pigment-producing cells called melanocytes, Dr. Elbuluk says, leading to loss of skin color alongside a higher risk of associated autoimmune conditions. Over time, it can spread on a person’s body, often in an unpredictable way, and in some cases this spread can be rapid.
Vitiligo is not contagious
As a visible condition, vitiligo can have a profound impact on people’s lives. “My patients with vitiligo talk about how they feel self-conscious that people won’t want to touch them or shake their hand, because they mistakenly believe that it’s contagious,” Dr. Elbuluk says. To be clear, vitiligo is not a transmissible condition. “There’s a lot of room for growth and education about what vitiligo is and who it can affect, among other misconceptions.”
Kuberka was diagnosed with vitiligo as a second-grader after noticing a few spots on her body. In her younger years she was intent on hiding herself with full-coverage makeup and clothing, as she grew accustomed to unsolicited questions from classmates and strangers: Does your face hurt? Were you in a fire? Are you contagious? These interactions stung, but she’s since learned to shake them off and love the skin she’s in. “I focus on the positive,” she says. “They’re not trying to insult me—they’re trying to learn. It’s just not something I’m going to dwell on.”
There’s no “one-size-fits-all” method for managing vitiligo
No two vitiligo experiences are the same. Kuberka’s looks like years of layering on foundation, avoiding sun exposure, developing thick skin (figuratively speaking) from all those questions, and trying out various treatment options. Others experience a different kind of physical or emotional journey.
Since vitiligo impacts people in different ways, there’s no all-encompassing approach to navigating it. That’s why it’s important to find a dermatologist who understands the condition and has experience treating it—so you can partner with them to create an individualized management plan that fits your lifestyle.
“Unfortunately, there’s a lot of misinformation on the internet and social media—and that’s often the first place people go for answers before they see a dermatologist,” Dr. Elbuluk says. “We want to make sure we’re really addressing the individual needs and well-being of our patients and taking care of them holistically.”
The vitiligo community is supportive—and growing
Having open and honest conversations, and establishing a consistent, trusted relationship with your dermatologist is essential—but support goes beyond the doctor’s office. The vitiligo community is growing every day, and Dr. Elbuluk is encouraged by the resources available, including those from the Global Vitiligo Foundation (of which she is a board member), as well as empowering social media accounts, IRL support groups, and better representation of vitiligo in things like children’s books, advertising, and video games.
As for Kuberka, she finds connection by scrolling her phone for inspo from other people living with vitiligo and engaging in conversations about the best pre-foundation sunscreen or the latest BB-cream craze. She believes that embracing her condition with a light touch is a gift she can pass on to others, as raising awareness is key to helping people better understand vitiligo and support those who are living with it. “Just seeing and hearing about vitiligo more is going to have a huge impact on younger generations learning to cope with it,” she says. “And that’s definitely a positive.”
To learn more about vitiligo, hear from others living with the condition, and find a dermatologist near you, visit ThisIsVitiligo.com.
© 2023, Incyte Corporation. MAT-DRM-00958 06/23
1. Harvard Health Blog. More than skin deep. Accessed April 3, 2023.2. Bergqvist C, Ezzedine K. Vitiligo: A Review. Dermatology 2020; 236:571-592. Accessed April 3, 2023.3. Vitiligo. Mayo Clinic. Accessed April 3, 2023.
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