Allison Rogers was a toddler when her mother noticed first noticed the strangewhite spots on her skin. They appeared on her groin and soon had spread to herjoints, feet and hands, neck, face, stomach, and back.
"Both my feet were completely white," Allison, now 22, remembers. "I looked likeI was wearing socks all the time. Being half Mexican, it was definitelynoticeable."
Allison’s mom took her to a dermatologist, who diagnosed her with vitiligo – achronic skin condition that is classified under the broad category of"autoimmune diseases." Patients with vitiligo lose pigment in their skin forreasons that remain poorly understood. Michael Jackson famously suffered fromit, as does the open model Winnie Harlow, whose face carries distinctive whitepatches.
"It can be extensive and widespread, but I have plenty of patients who did noteven know they had it – they had a tiny white spot on their eyelid for example,"says Ahmet Altiner, a dermatologist in private practice in Manhattan. Up to 2percent of the population has some form of it.
Allison’s mother was told there was no treatment, but that she could try someexperimental approaches to darkening her skin. Since Allison was still so youngand the condition is not contagious or dangerous, her mother took her home,intent on raising her to have a normal life.
When she went out with her family to eat or to shop, people stared. Theywhispered. Kids commented on it "nonstop."
"They asked if I bleached my skin," she recalls. "It didn’t really bother meuntil I was about 14 and a couple of boys were mean for no reason. I would getbullied at in the hallway or they would call me ‘zebra’ or ‘spotted leopard.’"
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In the face of their cruelty, Allison’s mom reminded that she had no reason tobe upset or embarrassed about her appearance.
"My mom is amazing," Allison says. "She’s so confident that she jumped on itfrom the get-go and raised me to be resilient. But it still hurt."
Another person who was her rock growing up in their small Minnesota town was heridentical twin sister Katie, who interestingly has never had vitiligo.
"Vitiligo is not a 100 percent genetic disorder, but there is a geneticpredisposition," says Dr. Altiner, who has not treated either of the twins. "Agenetic defect with incomplete penetrance could be the reason why she got it,but her identical twin didn’t, meaning that they both have the genetic problem.
For reasons we do not understand, one of them was able to overcome this, and theother progressed to clinical manifestation of pigment loss."
The twins’ aunt also came down with symptoms of vitiligo much later in life, soit’s possible that the genetic predisposition runs in their family. In any case,that didn’t make growing up with it any easier – or the teenage boys any lessmean. But Allison relied on Katie for moral support at school.
"She was very protective of me," Allison recalls. "It probably brought us closerbecause she was my warrior."
As she got older, some of the spots started to get their pigment back – amystery to this day – and she would cover up the rest however she could withmakeup or clothes. The white areas are still "pretty significant" though on herhands and feet.
When Allison reached her early 20s, she decided to try a treatment her owndoctor had suggested: tanning beds. The theory was that tanning would allegedlycoax her pigment cells to produce the melanin they lacked.
So she became a regular at the tanning salon next door to the pizza place whereshe had her first job. At that point, the area below her belly button wascompletely devoid of pigment from one hip to the other. While her normal skintanned nicely, the white parts just burned. Badly.
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"I got the absolute worst sunburn," she remembers. "You could hold [a] hand upto it and feel the heat coming off of it."
Dr. Altiner stresses that tanning booths are never a good option for vitiligo -severe burns increase a person’s chance of developing skin cancer later. Butthere is a safe treatment for vitiligo called phototherapy that can be done at ahospital or clinic. Specialized medical light bulbs emit highly controlled dosesof narrow band UVB rays, via a dose that your doctor or nurse adjusts for you.
These bulbs "work on the immune cells more so than the pigment cells," Altinerexplains. "So it is not that they are ‘tanning’ the skin, but treating theabnormally active immune cells, thus allowing room for the pigment cells torecover and start doing their job, which is to produce pigment."
In college, Allison tanned daily for about two years but has since given it up.Now she covers up outside and wears sunscreen to be safe. As she’s reachedadulthood, she’s also shed her insecurities about having vitiligo. With herlofty ambitions to go into law enforcement and one day become a U.S. marshal,she’s got plenty else to focus on.
"I think I have very nice skin," she says now. "I don’t agonize over myreflection in the mirror. Everyone looks different, and this is just mydifferent."
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