I Have Vitiligo. Here’s What It’s Like to Live With This Rare Skin Condition

Have you heard of vitiligo? I hadn’t either, before I was diagnosed with it at age 17.

I was on a beach trip when I first noticed the uneven white patches all over my body, including around my eyes; my friends joked that I looked like a raccoon. I figured it was just a weird sunburn, and for the rest of the summer, I lathered on sunscreen and tried to stay in the shade. But the white patches just spread even more, and my family took notice. Before I started college, my mom thought it would be a good idea to talk to a dermatologist.

I expected the derm to lecture me for getting a tan. Instead, I learned I have an incurable condition. “It’s called vitiligo,” the doctor told me in a cold, matter-of-fact way. With vitiligo, cells that make color in the skin (called melanocytes) are destroyed, causing white patches to appear randomly all over the body, according to the National Institutes of Health. Michael Jackson had it, and fashion model Winnie Harlow has made headlines for landing high-profile campaigns despite her spots.

Experts aren’t sure what triggers the condition (which affects about 1% of the population), but some believe it may be an autoimmune disease. With autoimmune diseases, the immune system mistakenly attacks a healthy part of your body—in this case, the melanocytes. Others theorize vitiligo may be caused by genetics, while some say emotional stress or a sunburn can trigger it.

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