The psychological burden of vitiligo often receives less attention than its visible skin manifestations, despite growing evidence of its effect on mental health and quality of life.

An estimated 100,000 individuals in Belgium with vitiligo and nearly 1 in 4 experience severe depressive symptoms.

Vitiligo is a chronic autoimmune disease in which the immune system attacks melanocytes, resulting in depigmented patches of the skin that are no longer tan. The condition affects approximately 1% of the European population and can develop at any age.

Speaking with MediQuality, part of the Medscape Professional Network, Nanja van Geel, MD, PhD, professor from the Department of Dermatology at the Ghent University Hospital in Ghent, Belgium, said, “Vitiligo is not contagious and has nothing to do with hygiene. Although there is a genetic predisposition, the disease does not follow a simple pattern of inheritance. In addition to the skin, the hair, eyebrows, eyelashes, and mucous membranes may also be affected.”

The most common form is nonsegmental vitiligo, in which depigmented patches typically appear symmetrically on various parts of the body. Approximately 10% of individuals have segmental vitiligo, which is usually confined to one area of the body and follows a different clinical course.

Vitiligo is also associated with other autoimmune diseases, particularly thyroid disorders, which affect approximately 10% of the individuals.

“We routinely screen our patients for thyroid disorders,” van Geel said. “A study conducted at our center found that about 15.5% of patients had another autoimmune disease. Sun sensitivity is a major factor in vitiligo. Because affected skin lacks melanin, it burns more easily, making adequate sun protection essential.”

Beyond the Skin

Although vitiligo is often perceived as a cosmetic condition, experts have emphasized that its effects extend well beyond the skin.

“When lesions are visible on the face or hands, patients are constantly confronted with reactions from others,” said Arjen Nikkels, MD, PhD , professor and head of the Department of Dermatology and Venereology from the University Hospital of Liège, Liège, Belgium. “This affects self-confidence, social relationships, work, and mental health.”

According to international data, nearly half of the European individuals with vitiligo reported symptoms of moderate-to-severe depression. Anxiety disorders are also common and can affect intimate relationships, body image, career choices, and overall quality of life.

Nearly half of the individuals report that vitiligo affects their intimate relationships, and more than half use clothing, makeup, or camouflage products to conceal the affected areas of skin.

“The impact of vitiligo is widely underestimated,” said Paul Monteiro, vice president for Europe at the Vitiligo International Patient Organizations Committee. “It is not simply a loss of pigmentation. Individuals also experience stigma, reduced self-confidence, and a lack of understanding.”

Diagnosis and Treatment

According to experts, important gaps remain in the diagnosis and management of vitiligo. Some individuals wait several months to a year before receiving a diagnosis and often receive limited information during their initial consultation.

“General practitioners and some dermatologists still have limited knowledge of vitiligo,” van Geel said. “As a result, individuals are not always adequately informed or referred promptly to a specialist.”

The diagnosis is usually established clinically, often with the aid of an ultraviolet lamp. According to experts, early recognition, and prompt referral to a dermatologist with expertise in vitiligo can make a significant difference.

The experts also emphasized that the longstanding belief that vitiligo is untreatable is no longer accurate.

“We now have several therapeutic options,” van Geel said. “These treatments can stimulate repigmentation, reduce disease activity, and help prevent the development of new lesions.”

Available treatments include topical corticosteroids, calcineurin inhibitors, phototherapy, and newer therapies such as JAK inhibitors. However, treatment often requires patience.

“Individuals sometimes need to continue treatment for months or even years before optimal results become apparent,” Nikkels said. “That is why ongoing support throughout the course of care is essential.”

Better Care

The European White Paper on Vitiligo, developed by patient organizations and dermatology experts, calls for greater public awareness, improved education for healthcare professionals, and an integrated model of care that also addresses mental health.

The authors noted that despite therapeutic advances, many individuals are still told that vitiligo is untreatable, even though effective treatment options are available.

The awareness campaign at the Brussels Central railway station aimed to improve public understanding of vitiligo as a chronic autoimmune disease rather than simply a cosmetic condition.

“Vitiligo is not life threatening, but its consequences can be profound,” van Geel said. “Earlier diagnosis, accurate information, and better support can substantially improve patients’ quality of life.”

Individuals with vitiligo shared their experiences during the event.

Florian, a 30-year-old dancer who developed vitiligo at the age of 14 years, described years of shame, bullying, and fear of other people’s reactions.

“The way people looked at me was sometimes harder to bear than the disease itself,” he said.

A nurse with vitiligo also described how the condition continued to affect her daily life despite undergoing multiple treatments.

According to patient advocacy groups, these personal stories convey the same message: Vitiligo is not just about visible skin changes. It also affects one’s self-image, relationships, work, and mental health.

“Vitiligo is not just about loss of pigmentation,” Monteiro said. “It is about stigma, mental health, and the right to be heard.”

This story was translated from MediQuality, part of the Medscape Professional Network.