If your child has been diagnosed with vitiligo — a chronic autoimmune condition that causes patches of the skin to lose pigment, making them appear milky white — you know how much it can affect their life.
Vitiligo is very visible to your child and other people, and it can spread to any body part at any time. Although there are treatments, there is currently no cure for the condition. Life with vitiligo can cause considerable emotional distress in children.
Your child’s vitiligo can also be distressing for you as a parent. Here’s how to take care of your child while getting support for yourself as well.
The Challenges of Caring for a Child With Vitiligo
According to a study published in 2022, about 1 in 100 people in the United States have vitiligo, and one-third of them are children.
Vitiligo can be a difficult diagnosis to come to terms with, both for children and their parents, according to Samuel Hetz, MD, a dermatologist and the medical director of Concept Medical in Ottawa, Ontario. But parents are often more concerned about the condition than the children themselves are, Dr. Hetz says.
In addition to being concerned about the usual pressures of childhood and adolescence, parents may worry about the social problems their children are more likely to face because of vitiligo. They might worry that their child’s peers will stare at, bully, tease, discriminate against, or avoid the child, explains Brett King, MD, PhD, a dermatologist at Yale Dermatology in Middlebury, Connecticut, and an associate professor of medicine at Yale School of Medicine in New Haven. Parents may struggle to and comfort and communicate with their child when they experience these psychosocial issues.
“Because no one knows exactly what causes vitiligo and how it might progress, parents can struggle with understanding the condition,” says Sheilagh Maguiness, MD, a pediatric dermatologist and an associate professor of medicine at the University of Minnesota Medical School in Minneapolis. Parents may search for one specific cause, such as a food allergy. But no dietary or lifestyle changes have been found to affect vitiligo, Dr. Maguiness says.
The Emotional Toll of Parenting a Child With Vitiligo
A study published in 2021 explored the experience of caring for children with appearance-affecting conditions like vitiligo. Researchers found that many parents experienced guilt, self-blame, overprotectiveness, anxiety and depression, anger, resignation, and helplessness, which can negatively influence their quality of life. Some parents also felt that when reaching out for support to help their child, their needs were unmet.
Another study noted that caregivers of children with vitiligo also experienced an impaired social life.
“Caring for a child with vitiligo can be time-consuming and demanding, potentially leading to caregiver burnout and exhaustion,” Hetz says.
Because of its unpredictable nature, parents may also feel hopeless, as they fear that their child’s vitiligo will spread rapidly and without warning, explains Dustin Portela, MD, a dermatologist and the founder of Treasure Valley Dermatology in Boise, Idaho. “Parents feel as if they have lost control because there is little they can do to alter the course of the condition,” Dr. Portela says.
8 Ways to Be an Effective Caregiver for Your Child
Experts offer these tips for how to take care of your child — and yourself.
1. Prioritize Your Child’s Overall Skin Care
The first step is to be diligent about your child’s skin health, especially regarding sun protection. “Protecting the skin from excess sun exposure is critical with vitiligo,” Hetz says. Every day, put a broad-spectrum, water-resistant sunscreen with a sun protection factor (SPF) of 30 or higher on your child’s body.
If your child is sweating or in the water, have them reapply sunscreen every two hours. Dress your child in protective clothing, including long-sleeved, lightweight shirts and pants, along with a hat and sunglasses.
Moisturizing is just as essential as sun protection. Dryness can worsen vitiligo, according to Hetz. So it’s also vital to keep your child’s skin moisturized each day with a gentle, unscented moisturizer to prevent dryness.
2. Stay Up-to-Date on Your Child’s Primary Care
Approximately 15 to 25 percent of people with vitiligo develop other autoimmune conditions, including thyroid disease, rheumatoid arthritis, type 1 diabetes, psoriasis, lupus, Crohn’s disease, and ulcerative colitis. Regular care and evaluation through a primary care pediatrician is important to keep your child’s overall health in check, so be sure to stick to any well-child visits or other appointments your child’s pediatrician suggests.
3. Accept Help From Loved Ones
The challenges of caring for a child with vitiligo can be physically and mentally exhausting, but you don’t have to face them alone.
When friends and family offer to help you with your child, take them up on it. They might watch your child so you can rest and recharge, or comfort your child when they are feeling down.
4. Consider Working With a Mental Health Professional
Instead of dismissing your mental health concerns or directing too much attention and worry toward your child — which may create more worry and anxiety in them — work with a therapist or counselor, Dr. Maguiness advises.
Therapy can help your child deal with the emotional impact of the condition and its social implications, according to Portela. A therapist can help you and your child develop healthy coping mechanisms and may also help you learn to express yourself and your feelings, communicate better with your child, and work through any concerns, Maguiness says.
5. Educate Your Child About Their Condition and How to Talk About It
Teach your child that vitiligo isn’t contagious, doesn’t cause them physical harm, and that their skin is worth caring for and appreciating. “Make sure your child understands that their skin condition is not something to be ashamed of. It is simply part of who they are,” says Maguiness.
Give your child the tools to talk to others about their appearance. “Depending on their age, it is helpful to give your child the language and knowledge to address questions from children or others who might be curious about vitiligo,” Maguiness says. Tell them to honestly answer people’s curiosities by saying, for example, “I have vitiligo. It’s a skin condition, but it’s not contagious, and I’m healthy!”
6. Create a Comfortable Space for Your Child to Express Emotions
To help your child cope with any distressing emotions, “make time and space for your child to express themselves, or even be sad; this is a normal and healthy approach,” Maguiness says. Listen to your child when they show frustration or concern about living with a visible difference. If you’re struggling with how to show up for your child without feeling overwhelmed, you can speak with a therapist who can advise on effective listening.
7. Join a Support Group
Vitiligo affects 70 million people worldwide, but you or your child may only realize this once you become a part of a support group. A support group can also help you and your child feel less alone in your experience and empower you to live actively and confidently with the condition. You can find support groups online or close to you through organizations such as Vitiligo Support International, Global Vitiligo Foundation, and Vitiligo Research Foundation.
8. Work With a Board-Certified Dermatologist
If you and your child aren’t working with a dermatologist already, schedule a visit with one to manage the condition. With proper treatment, you can often stop your child’s vitiligo from progressing and restore skin pigment, according to Portela.
A dermatologist can determine the best treatment for your child, which might include.
Medications like topical steroids, ruxolitinib, or calcineurin inhibitors
Light therapy
Depigmentation therapy
Surgeries like melanocyte transplants, micro pigmentation, and skin grafting
The Takeaway
Vitiligo, an autoimmune disease that causes areas of depigmented skin, affects 1 in 100 people, one-third of whom are children.
Living with vitiligo can be difficult for a child as well as for their parents, who may worry that their child will be stigmatized.
Parents can help their children manage vitiligo’s physical and emotional effects by working with a board-certified dermatologist and a therapist.
Joining one of the many online support groups for people with vitiligo can help those living with the condition feel less alone.
EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Geisler A et al. Importance of and instruction for starting a vitiligo patient support group. Dermatology Online Journal. November-December 2022.
Thornton M et al. “Have We Done Enough?” A Cross-condition Exploration of the Experiences of Parents Caring for A Child with an Appearance-affecting Condition or Injury. Developmental Neurorehabilitation. April 14, 2021.
Ross Radusky, MD, is a practicing board-certified dermatologist at the Dermatology Treatment and Research Center in Dallas. Originally from New York City, he graduated summa cum laude from the City University of New York and then received his MD from the New York University School of Medicine. There, he was inducted into the Alpha Omega Alpha Honor Medical Society and served as chapter president for two years. He completed his residency in dermatology at NewYork-Presbyterian Hospital and Weill Cornell Medical Center, and at Memorial Sloan Kettering Cancer Center.
Dr. Radusky practices general and cosmetic dermatology with a focus on the early detection of skin cancer, and provides patients with a personalized approach to looking their best at any age. He has authored articles and textbook chapters on the clues that our finger- and toenails may provide us about internal disease, as well as on comprehensive therapies for cosmetic dermatology and reversing the signs of skin aging.
Complementing his medical practice, Radusky has a strong passion for the cultural arts, particularly in expanding access to youths and seniors. He previously served as an artist instructor for the Rockaway Artists Alliance, a New York City nonprofit arts and education organization, and then served as both a board director and treasurer of the organization throughout his medical school training.
Radusky enjoys spending time outdoors with his wife Robyn, son Oliver, and poodle Lucy, where he can usually be found preventing photoaging and reducing the risk of skin cancer beneath an umbrella in a wide-brimmed hat. He is also the proud inventor of Sunshotz, the world’s only sunscreen measuring cup, designed to help patients of all ages apply the proper amount of sunscreen needed to enjoy all the sun without the burn.
Frances Gatta is a freelance health and life sciences writer whose work appears regularly in Nature, Forbes Health, Healthline, WebMD, Yahoo Life, among other publications. She is based in Nigeria and holds a law degree from the University of Lagos. She has devoted her career to creating content that helps demystify health and science for the general audience.
