Vitiligo’s effects are more than skin deep. This pigment disorder affects about 70 million people worldwide and can start at any age, but about half of those who develop vitiligo will experience symptoms before their twentieth birthday, and about 95 percent will develop them before age 40. As many as 35 percent of vitiligo patients are children.
Unfortunately, many myths regarding this condition and its treatments exist within dermatology and primary care circles. These can get in the way of the successful resolution of vitiligo and can contribute to patient frustration and angst.
Members of the Vitiligo Working Group (VWG) helped Practical Dermatology® dispel, debunk, and demystify the top 11 vitiligo myths. The VWG is a physician-led organization that aims to improve the lives of people living with vitiligo. It was first developed in 2011 at the Henry Ford Hospital in Detroit.
MYTH No. 1: Vitiligo is just a skin disease
REALITY: A robust body of scientific evidence suggests that vitiligo is an autoimmune disease, says Michelle Rodrigues, MBBS, co-founder of the vitiligo clinic and consultant dermatologist at St. Vincent’s and The Royal Children’s Hospital in Melbourne, Australia. There are many associations with vitiligo that are systemic including thyroid disease,
Type 1 diabetes, pernicious anemia, Addison’s Disease and cochlear dysfunction. “This is clearly an autoimmune attack on the cells that make pigments,” she says.
John Harris, MD, PhD, an Assistant Professor in the Dermatology Division of the Department of Medicine at the University of Massachusetts Medical School (UMMS) in Worcester, MA and director the Vitiligo Clinic and Research Center at UMMS, agrees. “There is some data now that shows patients who have vitiligo have decreased vision and hearing, and we are starting to be very interested in that,” he says. “Assuming vitiligo is limited to the skin is naïve.”
Insurers often propagate this myth, adds Nada Elbuluk, MD, an assistant professor at the Ronald O. Perelman Department of Dermatology at New York University Langone Medical Center in New York City. “It’s very frustrating when insurers write in and say ‘This is a cosmetic skin condition and we won’t pay for treatment.’ Vitiligo is a systemic disease with a very complicated pathogenesis,” she says.
MYTH No. 2: Vitiligo is a disease of dark-skin
REALITY: “Vitiligo can affect people of any gender, any race and any age,” Dr. Elbuluk says, adding that it can be more visible in darker skin individuals. “This disease can be devastating for patients of all skin types.”
MYTH No. 3: Vitiligo is no big deal
REALITY: This condition can carry a huge social stigma and some patients suffer in silence with depression, anxiety, and the loss of confidence, says Dr. Rodrigues. This is often independent of the degree of skin involvement.
“You can’t assume that a patient who has a lot of depigmentation is bothered or that someone with just a little is unfazed,” explains VWG Founding Member Iltefat Hamzavi MD, a dermatologist in Michigan. “It’s a quality of life issue. Some patients won’t wear certain clothing, go out at night, or go to work because of the depigmentation. Some don’t want to have children because they are scared of passing it on. All of these quality of life issues matter, and these are the things we are looking to improve with treatment. Some dermatologists only see the depigmentation, not the bigger picture.”
MYTH 4: We don’t know what causes vitiligo
REALITY: “Vitiligo is one of the best characterized autoimmune diseases in humans,” Dr. Harris says. The risk of vitiligo in the general population is 1 in 100, but if you have a first degree relative with vitiligo, your risk is increased to five to six percent, and increased to 25 percent if you have an identical twin. Genes are important but they are not everything.” Vitiligo can be exacerbated or unlocked by certain environmental factors, like chemicals that include some hair products, detergents and ornamental skin dyes, he adds.
MYTH No. 5: Vitiligo is untreatable
REALITY: “This is untrue,” Dr. Elbuluk says. “Those who don’t treat vitiligo on a regular basis aren’t always aware of how effective therapy can be. They may try certain therapies and if patients don’t improve, they hit a wall and say, ‘There is nothing more we can do,’ and then patients get very discouraged, so by the time they see an expert, they may feel depressed and hopeless.”
Vitiligo treatment goals are stabilization, repigmentation, and maintenance, Dr. Hamzavi says. ”We need to stop the spread and get color back to improve quality of life and ultimately figure out maintenance.”
MYTH No. 6: Vitiligo patients won’t be satisfied with anything less than 100 percent improvement
REALITY: “It’s very rare that we get a 100 percent improvement, but many vitiligo patients are quite happy with any improvement,“ Dr. Hamzavi says. Today’s treatments—phototherapy and topicals—can work wonders over time. “We have to warn our patients that treatment takes time so we can manage their expectations,” he says. “You cannot expect to get better quickly. It takes three months for 25 percent of color to return, 50 percent at six months, and 75 percent at nine months.” Sharing before images with patients throughout therapy allows them to see the improvements, and will increase satisfaction with treatment, he adds.
MYTH No 7: Treatment makes vitiligo worse
REALITY: Some patients are terrified that anything can make them worse so they avoid creams, sun exposure, and going to the dermatologist for phototherapy, because they feel it is so unpredictable and don’t have any faith, says Amit Pandya, MD, Professor of Dermatology at UT Southwestern in Dallas. “If a person goes through treatment and does it for at least three months, they should not get worse,” he says.
MYTH No.8: There is no cure for vitiligo
REALITY: Surgery works well for recalcitrant vitiligo that affects 10 percent or less of the body. “We never say ‘cure’ with vitiligo, but a vast majority of our surgical patients go into remission and are able to maintain color for five years,” Dr. Hamzavi says. “If they respond, they are likely to maintain the repigmentation for up to 10 years.”
MYTH No. 9: The vitiligo treatment pipeline is anemic
REALITY: “All the arrows point to this being an autoimmune disease, and companies who have drugs that block involved pathways will move forward, and the pipeline will grow robust,” says Pearl E. Grimes, MD, director of the Vitiligo and Pigmentation Institute of Southern California, and a Clinical Professor of Dermatology at UCLA. Dr. Grimes just received the Research Achievement Award in Vitiligo and Pigment Cell Biology Research from the American Skin Association. Janus kinase (JAK) inhibitors that interrupt interferon gamma signaling may play an important role in the future, she says.
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Clinuvel is currently trialing SCENESSE as a repigmentation therapy in vitiligo. SCENESSE (afamelanotide 16mg) is based on the naturally occurring hormone α-MSH.
The more effective choices dermatologists have at their disposal, the better for patients, she says. “Biologics won’t necessarily be the path for every patient who has vitiligo, but these therapies will be appropriate for patients who have more extreme and recalcitrant disease,” Dr. Grimes says. “We need a heavy hitter for those who have more severe disease and a great topical drug that blocks the immune pathway in patients who have limited involvement.”
To learn more about the Vitiligo Working Group, visit: http://www.vitiligoworkinggroup.com/
Dr. Harris is also hopeful: “We think we are getting much closer to targeted immunotherapy for vitiligo.” A question that remains is whether current or future vitiligo treatments will reduce related comorbidities, he says.
MYTH No. 10: Hydroquinone is contraindicated in vitiligo
REALITY: Depigmentation with monobenzyl ether of hydroquinone (Monobenzone) is an option for patients who have lost at least 70 percent of their pigment, says Dr. Elbuluk. In fact, monobenzone is the only FDA-approved treatment for vitiligo. “It is a really personal decision and not everyone can tolerate it,” she says. “If I have a darker-skinned patient who wants to undergo it, I also suggest that they speak with a psychologist to make sure they will be OK with that transition.”
MYTH No.11 : ‘Natural’ treatments can cure vitiligo
Some plant-based products have been used for hundreds of years as a paste or oil to be applied to lesions of vitiligo, followed by exposure to the sun. While this is a slow but reasonable treatment for vitiligo, there are many claims of other so-called natural products that can rapidly reverse vitiligo, which are not based on sound evidence Dr. Pandya says. “That’s a disservice to patients. Antioxidants in the form of simple, low-cost vitamins are part of our treatment, but by no means a stand-alone therapy,” he says. Taking a daily multivitamin and eating a healthy balanced diet rich in fruits and vegetables is recommended. “These measures support the immune system and keep cells healthy so there is less autodestruction of melanocytes.” n