At 12 years old, Ashley Soto from Orlando, FL, was diagnosed with a skin condition called vitiligo, which causes patches of skin to lose pigmentation. In a few months, she was covered in blotches on 75 percent of her body, leading to a drastic plunge in self-confidence. She was bullied for the way she looked and hid underneath long-sleeved tops and jeans every day—one little girl even saw her in a bikini and asked if she had “showered in bleach.”
“I was so shocked that someone said that to me that I cried and cried. I didn’t want to have the condition anymore,” she told the Daily Mail. “It made me want to start hiding away from people and left me covering my skin, as I didn’t want people to make fun of me.”
After years of suffering, Soto had enough and sought to make the best of her condition. Her ah-ha moment: looking at her skin blotches as a work of art rather than some sort of disease. Now, at age 21, she is embracing her body and inspiring people with her story (she has more than 80,000 followers on Instagram alone).
“I never realized how beautiful my vitiligo was until I traced it with a black marker. It really helps to bring out the different colors of my skin,” she told the Daily Mail. “I was always trying to find a way to look at my skin in a positive light. I couldn’t do that before starting this. Now what others would perceive as an imperfection, I have made into something more beautiful. I’ve learned to accept myself more than I did before.”
New York dermatologist Estee Williams, MD, says vitiligo affects both men and women equally (adults and children), although rates vary by ethnicity. “The prevalence of vitiligo is approximately 1 percent of the world’s population, with rates as high as 8 percent reported in India. The consensus is that vitiligo is likely an autoimmune condition, with the body erroneously attacking the pigment-producing melanocytes, a cell whose job it is to make melanin pigment. Researchers are studying the causes of vitiligo, and it is considered multifactorial with both genetic and environmental causes. I always remind myself that even though an overwhelming majority of skin diseases are not dangerous, skin problems are often a very public affair. To hide our skin, we would have to hide ourselves. In a superficial society, the emotional impact of skin disease should never be underestimated.”
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Although a permanent cure for vitiligo doesn’t currently exist, Dr. Williams says there are in-office therapies that can help minimize the pigmentation, and some work well enough in some patients to re-pigment the skin completely so that they are back at their normal baseline (but that does not guarantee a sustained permanent cure). “Topical corticosteroids, topical immunomodulators (Protopic, Elidel), and narrowband ultraviolet-B therapy (NBUVB), which all work by dampening the immune system in the skin. Phototherapy booths look like tanning beds but emit a controlled dose of light in a safe manner. Patients typically visit a phototherapy center two to three times a week, and stand in the booth for several minutes. The Excimer laser is similar to phototherapy and can also be used, but only on smaller areas.”
Doctors are also working to find other methods for treatment that could be even more successful. “Emerging therapies include the use of ‘biologics,’ which are genetically engineered proteins that are deliberately designed to target very specific pathways in the immune system, and there is a lot of excitement surrounding JAK inhibitors, in particular.”
Scroll through to see more of Soto’s body art—check her out on Instagram too—and prepare to be amazed at her bravery and skill.