Living With Vitiligo: From Hiding to Helping Others
Key takeaways:
When she was 7 years old, Erika Page noticed pigment was disappearing around her joints. She was later diagnosed with a rare condition called vitiligo.
For years, she hid her condition and used tanning lotions to try to even out her skin.
Today, she runs a website dedicated to helping people with vitiligo feel less alone.
Erika Page’s worst days of living with vitiligo came in high school and college when she looked in the mirror, saw the giraffe-like spots all over her body, and sobbed.
“I was very depressed, very obsessed with how much I hated my skin,” she said. “It felt like a prison.”
The best days are now. At 33, she is a married mom of a 14-month-old daughter, working full time in marketing. She is also 6 years into her passion project: Living Dappled, a blog and lifestyle guide she founded to help others with the disease.
“My heart is very much in this,” Erika says.
Helping others and bringing together a community of people with common life experiences ended up healing her soul as well.
Patches appeared in grade school
Erika was 7 years old when she saw the pigment disappearing on her knees, then her elbows and knuckles. After a series of consultations with specialists, Erika, who lives in Richmond, Virginia, was diagnosed with vitiligo.
The condition is rare and is caused by the body’s immune system attacking the cells that make pigment. It occurs in about 1% of people in the U.S.
Erika started rubbing a prescribed topical steroid into her skin. But it was only to be used on small areas. The spots started to grow faster than the cream could keep up, so she stopped treatment.
Despite all the heartache she has experienced with vitiligo since then, she says, she has never regretted that decision.
Erika’s form of vitiligo is rarer than most cases. Over the years, she has lost all her pigment. So instead of having white patches, her skin is uniformly pale. While some of her hair remains brown, the rest of her long hair is bright white.
Erika says when she was pregnant, her eyebrows and lashes returned to brown. She’s interested to see if they will stay that way or eventually revert to white.
Others often misunderstood her condition
People with normal skin tones underestimate the mental toll the condition can take, Erika says.
She remembers people saying well-meaning things about her appearance, such as: “I hardly even noticed.”
She says comments like that can be “diminishing.” She thought at the time, “How could you not notice this? I think about it 24/7, 365 days a year. It is the lens through which I view my life.”
She also remembers the hurt she felt as a child when an adult asked her, “Were you in a bike accident? Were you burned?”
She no longer gets asked about her condition because she appears just pale, not spotted, and that has been a “huge relief” from her earlier days, she says.
Spray tans meant freedom
After college, Erika started using tanning lotions to even out her patchy skin.
Once a week, she would scrub off the remains of the previous tan and go to a tanning salon and get a spray tan. She would lie on special sheets for hours waiting for the color to dry.
With the tan and with full face makeup, she says, she was free. Free from the stares. Free from questions.
“The joy and freedom of that — to be able to walk down a street and not be unnoticed — was amazing,” she says.
But the tan also became a toxic security blanket, she says.
If there was a streak somewhere, “I would have full-on panic attacks. I wouldn’t want to leave the house.”
Before she turned 30, she signed up for a body-confidence workshop and thought she couldn’t show up hiding behind a tan. So she let the tanner fade for the weeks before the workshop. She never went back to tanning.
People with vitiligo are more susceptible to sunburn. So Erika has to be very careful of too much sun exposure. She avoids going out in the middle of the day and can’t sit by a window at a restaurant in the daytime.
“I can burn within 10 minutes,” she says.
Repigmenting treatment for vitiligo could be game-changer
In July 2022, the FDA approved the first repigmenting treatment for vitiligo, ruxolitinib.
Erika gets emotional when she talks about what it might mean for people living with the condition.
Even though she says she doesn’t want to use it herself because her skin is now all one color, the topical cream will change lives for others.
“It is such a groundbreaking and huge moment for the vitiligo community,” she says. “It offers so much hope to people that want a solution.”
At the same time, there are growing signs of recognition and celebration of vitiligo as evidenced by Barbie and Ken dolls with vitiligo and magazines featuring models with vitiligo.
“I can’t imagine what it would have been like to grow up with a Barbie that looks like me,” Erika says.
Social, economic consequences can be severe
The current message from popular culture is that vitiligo is OK, she says. And while that’s great, it’s important to remember that for some, the condition is debilitating.
“In some parts of the world, it ruins your chances at marriage. It can ruin your family. It can ruin your chances of getting a job,” Erika says. “We have to recognize the other part of the story.”
Erika points out that many people will never know someone with vitiligo. She once reached out to a stranger her age online who had vitiligo, desperate to talk with someone who could understand what she was experiencing.
“I cried when I got off the phone because I realized for the first time in my life that I wasn’t alone,” she says.
That helped inspire her to eventually start Living Dappled, a place where people with vitiligo can come to talk about the everyday experiences only they can truly appreciate.
It also lists dermatologist-approved sunscreens, where to find a specialist, profiles of people living with vitiligo, and treatments and tips on everything from clothes to makeup to navigating emotions.
But the biggest benefit of the website is evident in the number one comment people leave, she says: “Thank you for helping me feel less alone.”
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