Michael Jackson may be the most famous person ever to have vitiligo, but he’s definitely not alone. The autoimmune disorder, in which the body attacks cells that give skin its pigment, affects roughly one out of every 100 people in the world—regardless of race or gender.
In the US, it’s estimated that up to five million people have this condition. Even though vitiligo (“vittle-eye-go”) occurs most commonly before age 30, it can develop at any age. People with certain other autoimmune disorders, such as the thyroid condition known as Hashimoto’s disease and type 1 diabetes, are at greater risk.
Good news: While vitiligo is still incurable, recent scientific advances are uncovering important facts about the condition that are leading to more—and better—treatment options than ever before. What you need to know…
The Mystery of Vitiligo
A malfunctioning immune system has been implicated as the cause of vitiligo. Scientists theorize that the immune system attacks melanocytes, the cells that make pigment (aka melanin) in our skin, hair and eyes, mistaking them for a disease. When this occurs, pigment is lost and white patches develop.
In a person with vitiligo, pigmentation can be lost anywhere on the body, but common areas include the face, neck, scalp, hands and arms. Sometimes vitiligo affects the armpits, mouth and genitals.
Vitiligo is highly individualized. One person might lose all pigment in his/her body over the course of a lifetime, while another develops a single white patch later in life. For some, the condition remains stable for decades, until something triggers the immune system and it spreads again. Triggers can include a bout of severe stress…a cut or burn…or environmental exposure to certain chemicals, including phenols found in permanent hair dyes and some detergents.
Are You at Risk?
Vitiligo is an equal-opportunity disorder, but the most common risk factor seems to be genetic. Up to 25% of people with vitiligo also have a relative with the disorder. The more genes you have in common with a person affected by vitiligo, the greater your own risk. If you have…
- No relatives with vitiligo, your risk is one in 100.
- A parent or sibling with vitiligo, your risk is about six in 100.
- An identical twin with vitiligo, your odds of developing the disorder jump to about 23 in 100.
The fact that identical twins—who share the same genes—don’t have the same risk for vitiligo suggests that the cause isn’t completely genetic.
Having another autoimmune disorder also increases risk. When researchers looked at nearly 1,100 people with vitiligo, close to 20% had another autoimmune disease, such as alopecia, inflammatory bowel disease, lupus or Sjogren’s syndrome, according to research published in Journal of the American Academy of Dermatology.
At this time, there are no FDA-approved medical treatments to reverse vitiligo—but that could be changing as promising new treatments are now in clinical trials (see below). In the meantime, people with vitiligo are prescribed treatments “off label,” meaning that the medication was originally intended for another condition. Most insurers cover these treatments for people with vitiligo, but check first. Current treatment options…
Prescription topical steroids can help restore the pigmentation in smaller areas of the body. The cream provides moderate improvement, and side effects may include stretch marks and thinning of the skin.
Note: When a person’s vitiligo is rapidly expanding, a low-dose oral steroid is sometimes used until the disease has stabilized.
Topical tacrolimus is a newer treatment that can be applied to parts of the body that are more sensitive to the side effects of long-term use of steroid cream, such as the face, genitals, breasts and underarms.
Narrow-band UVB phototherapy is recommended when depigmented areas are too extensive (typically more than 5% of the body) for topical treatment alone. In most cases, it requires two to three visits per week with each treatment lasting only about one to four minutes. However, the treatment may take up to a year to be effective and must be continued indefinitely to maintain results. Note: This type of phototherapy uses UV radiation that does not increase risk for skin cancer.
What happens: This treatment is administered in a booth in which the patient stands with the affected areas of the body exposed to UVB light. UV goggles are worn to protect the eyes. The treatment usually is covered by insurance and is offered at dermatologists’ offices throughout the US.
Note: A laser therapy, similar to narrow-band UVB phototherapy, is highly effective on small areas of the skin. Brand names include XTRAC and Pharos.
“Bleaching” therapy, monobenzone (Benoquin), is a topical “depigmenting” cream that can be used if a person has extensive vitiligo (covering more than 80% of the body). With this treatment, skin is permanently lightened in unaffected areas of the body so that the spots caused by vitiligo are no longer noticeable. The treatment may take one to two years to complete. Side effects may include burning, itching and redness of the treated skin.
JAK inhibitors are drugs that are already on the market to treat conditions such as rheumatoid arthritis and bone marrow disease. The drugs, tofacitinib and ruxolitinib, can be used both orally and topically. These medications block the cellular pathway that fuels vitiligo.
Impressive study result: In the first-ever, large-scale clinical trial for vitiligo treatment, study participants used either a medicated cream containing a JAK inhibitor or a placebo. After six months, about half of the people who used a higher dosage of the medicated cream saw pigment return to 50% of the vitiligo on their faces, compared with just 3% of those who used the placebo. Researchers expect even greater improvement with further treatment, and larger trials are expected. While FDA approval is still years away, this treatment shows tremendous promise. Until then, this treatment can be prescribed off-label and produced by a compounding pharmacy.
Living with vitiligo
Because vitiligo is so visible, it impacts a person’s self-esteem and quality of life. Strangers may stare or make rude comments. Up to one-third of people with vitiligo experience symptoms of depression. Because melanocytes are found not just in skin but also in the eyes and ears, vitiligo can, in rare cases, affect those areas, too. Hearing loss can occur if the immune system attacks the melanocytes in the inner ear.
For people with vitiligo, lifestyle changes (such as diet, exercise, vitamins or supplements) have not been shown to help much. However, there is one step that should be followed at all times—wearing sunscreen. Patches of skin without pigment burn easily.
Skin damage also can trigger an autoimmune response that may lead to more vitiligo, so take particular care with cuts and burns. For the same reason, people with vitiligo may not want to get tattoos, especially if the disease is actively spreading or existing spots are getting larger. Makeup can be helpful. Good brands: Dermablend and Cover FX.
Support groups for individuals with vitiligo are a good resource for coping with the psychological effects of the disorder. To find such a group, consult the website of Vitiligo Friends, VITFriends.org, a nonprofit dedicated to enhancing the quality of life for people with vitiligo. Global Vitiligo Foundation, GlobalVitiligoFoundation.org, is another good resource to learn about research and local support groups.