Approximately 50 percent of people with vitiligo develop the condition before they reach the age of 20, and in about 25 percent of cases, vitiligo develops before the age of 8. Current treatment options for children with vitiligo include topical medications applied to affected skin, systemic treatments, and phototherapy, all aimed at returning color to the skin. Surgical treatments exist as well, but these are only recommended in stable, localized cases where other therapies have proven ineffective.
Some MyVitiligoTeam members have lived with vitiligo since childhood. "I have been looking for help since I was very little," one MyVitiligoTeam member wrote. “Living with this condition since [the age of] 5,” said another member of the community. “My grandmother had it, and my aunt had it.”
To learn more about treating vitiligo in children, MyVitiligoTeam talked with Dr. Pearl Grimes, director of the Vitiligo and Pigmentation Institute of Southern California and clinical professor of dermatology at University of California, Los Angeles.
Vitiligo is not life-threatening and does not cause serious health problems. However, it is often associated with other illnesses, including autoimmune thyroid disorders, alopecia areata, and diabetes mellitus, Dr. Grimes said. The condition can cause self-consciousness, reduce self-esteem, and create emotional stress. One study showed that more than half of the people with vitiligo surveyed said people stare at them, while 25 percent said the skin condition caused issues when interacting with strangers.
In a 2018 Nature article, vitiligo researcher Dr. John Harris wrote, “Some people with the condition are demanding that it be accepted as part of everyday diversity.”
With that said, parents may still choose to seek treatment for their children, and Dr. Grimes noted that many options exist. She said that the earlier treatment begins, the better.
“I love to treat kids,” Dr. Grimes said. “If we look at our database of outcomes in children versus my outcomes in adults, one thing we know is that kids have better outcomes. That's why it's so important that when you diagnose vitiligo in the pediatric population, you institute therapy, because there's a much greater likelihood that they're going to do better over time.”
Dr. Grimes explained that it is not unusual for parents to request vitiligo treatment for their children, sometimes as young as 2 years old. While that may seem early, she said that it could improve the child's outcomes.
“If you have onset at age 2, the data suggests that probably the prognosis is not as good,” she said. “That patient has a greater likelihood that they're going to progress, and you may deal with more severe involvement over time.”
When evaluating young children, Dr. Grimes takes into account such factors as immune system status, progression of the disease, and severity or body surface area affected. “The advantages of treatment must always outweigh the disadvantages,” she said. Assuming the criteria are met, Dr. Grimes said that she would recommend treating a child with vitiligo.
Dr. Grimes described her therapeutic approach as having three main objectives:
Applying this approach has allowed Dr. Grimes to determine how successfully treatments can be maintained in the long term.
If a child’s vitiligo is progressing rapidly, Dr. Grimes may use a course of oral corticosteroids for about two weeks to slow or stop the spread. She may consider other approaches, depending on which area of the body is affected and how well the vitiligo responds to treatment.
Another critical goal in treating children is repigmentation, Dr. Grimes said.
“The calcineurin inhibitors [such as Protopic (Tacrolimus)] work extremely well,” she said. “They do phenomenally well on the face, the area of key cosmetic concern for children and adults. Topical corticosteroids offer comparable results. If it's more extensive, we use narrow-band UVB phototherapy. ... For a stubborn, localized area, I use targeted phototherapy, the excimer laser.”
While a complete and permanent reversal of symptoms might not always be achievable, Dr. Grimes said she always tries to get the best outcome possible, whatever it may be for that individual.
“What I work to do is optimize the level of repigmentation to achieve as much as I can,” she said. “If my patient is at 50 percent at six months ... I'm going to keep pushing to get 75 percent or more return of color.”
Outcomes are different for each child she treats, making it difficult to recognize when she’s done all that she can, and not push beyond that. “Once I think [the treatment has] definitely plateaued after adjusting multiple therapies, then at that point, I begin to back off,” she said. “If I can taper that patient out over time, discontinue treatment, and monitor, that's ideal.”
Children with vitiligo may require ongoing maintenance treatment to preserve the repigmentation that they have achieved with treatment, she said.
“There's a cohort of patients who require some type of maintenance treatment,” Dr. Grimes said. “That maintenance may be intermittent ... it may be twice a week, calcineurin inhibitors.”
Maintenance will vary from child to child, and some may do well enough with their treatments to stop taking them, she said. However, even if treatment is discontinued, it is still essential to follow up regularly as you would with any other autoimmune disorder.
“They're still at risk for comorbidities [related health conditions],” she said. “It's an autoimmune disease associated with other autoimmune comorbidities, so it's important that patients understand ... how important it is, long term, to be monitored.”
Parents should expect to be engaged in their child’s vitiligo management for some time. “There's no quick fix for vitiligo,” Dr. Grimes said. “You’ve got to be in for the long haul.”
Generally, children seemed to have better outcomes than adults, she noted, and in many cases, both children and their parents are good collaborators in monitoring and treatment.
“They're good at playing a major role themselves,” she said of children with vitiligo. “I think it really has to be that partnership between the child and the adult to use the medications on a consistent basis, even for phototherapy.”
While there is currently no cure for vitiligo, clinical trials are in place testing a class of medications called Janus kinase (JAK) inhibitors for repigmentation. Studies are underway, and Dr. Grimes said they have shown promise and may lead to more effective treatments in the future.
One trial involved a 52-week study of the topical JAK inhibitor Jakafi (Ruxolitinib), which had excellent outcomes, Dr. Grimes said. There were no children involved in the phase 2 study, but that changed in the ongoing phase 3 trial, which is enrolling children 12 years of age and older.
“I think we will eventually begin to look at more aggressive agents for the pediatric population,” Dr. Grimes said. However, she characterized herself as very conservative when treating children, and does not recommend rushing to experimental therapies too soon. The benefits of treatments must always outweigh the risks. Traditional therapies, when used appropriately, work very well. When something better comes along with proven therapeutic value and negligible side effects, she would then consider expanding the tools at her disposal.
Parents can support their children by encouraging them to participate in their treatments actively and by helping them learn to follow their prescribed treatment regimens, although this has proven challenging during the COVID-19 pandemic, Dr. Grimes said.
“We have patients who come in for phototherapy,” she said. “There was a lapse, obviously, during the pandemic for many patients ... but there has to still be a regimented approach, and getting it done two to three times a week [is ideal] if we're really going to work to achieve the very best outcomes.” This is when home phototherapy can be very beneficial.
In addition to keeping up with regular treatments, parents can assist by protecting their kids from sunburns, which can sometimes trigger vitiligo, Dr. Grimes said. She also recommended that parents help their kids develop strategies to manage stress, and generally make sure that they’re enjoying life and having a good time.
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In partnership with the Global Vitiligo Foundation, which strives to improve the quality of life for individuals with vitiligo through education, research, clinical care, and community support.