For many people with the skin disorder vitiligo, the first sign is a small white patch of skin, often on the hands or face.
When the tell-tale chalky patches spread, vitiligo — pronounced vit-ill-EYE-go — can be disfiguring in ways that cause sufferers considerable emotional and psychological damage, says Dr. Anand K. Ganesan, MD, a UCI Health dermatologist and vitiligo expert.
“One of my colleagues calls vitiligo ‘the white patch that affects the soul,’ ” he says of Detroit-based dermatologist Dr. Iltefat Hamzavi, an international leader in vitiligo care like Ganesan. “It affects how patients see themselves, as well as how society sees them.”
An immune system disorder
Vitiligo is an autoimmune disease that causes the skin to lose its normal pigment. It affects between 1 percent and 4 percent of the world’s population, bleaching the skin in spots of all color. It most often affects the face, hands, neck, elbows and knees, but white patches can appear anywhere on the body.
People with vitiligo are also more susceptible to other autoimmune diseases, such as hypothyroidism, lupus and type 1 diabetes. Some 30 percent of those with the disease also may experience other skin problems and hearing defects. It affects men and women equally, and usually appears between the ages of 10 and 30.
While there is as yet no cure for vitiligo, Ganesan, associate professor at the UCI School of Medicine’s Department of Dermatology, says there are promising treatments.
“Many times patients believe there’s nothing that can be done to help them,” he says. “Unfortunately, many primary care providers and dermatologists aren’t aware of all we can do to help this condition.”
Promising vitiligo treatments
Ganesan says the promising treatments include:
A thorough understanding of the cause of vitiligo requires further study, but experts know that a mutation in some of the skin’s pigment cells seems to over-activate the immune system, which causes the skin’s natural color to disappear. The pigmented color may also return at any time.
“The good news is that the disease is dynamic, with pigment going away and then coming back,” says Ganesan.
“We can affect this dynamic by taking stem cells from a person’s hair and skin, then transplanting them to re-pigment the patchy areas. Our goal in therapy is to eliminate the things that make the immune system overactive and to allow stem cells to restore the normal skin color.”
The mainstay of vitiligo therapy is ultraviolet (UV) light treatment. UV therapy stimulates melanocyte stem cells to migrate from the hair to the skin. It has a high success rate but progress is slow. Most patients who undergo UV therapy two or three times a week see 25 percent re-pigmentation after three months, 50 percent after six months and 75 percent after nine months.
Breakthrough in immune system regulation
Topical steroids also offer some benefit, but newer medications called immunomodulators that help regulate the immune system seem to work better. Clinical trials are underway on a class of drugs called JAK inhibitors to develop new topical treatments that target specific cells.
“In a recent study, we saw a 60 percent improvement with topical application of the drug tofacitinib as compared to light therapy alone,” Ganesan says. “Often these therapies are combined with light therapy to induce further improvement.”
Skin grafting is another vitiligo treatment that has shown some success. Ganesan and his UCI Health colleagues are the only experts on the West Coast, and one of only four teams in the nation, to perform these skin grafts. His team also is working to develop more effective cellular transplantation therapies.
Although vitiligo is only slightly more common in people with darker skin tones, when it does strike them it is more readily apparent. It can be devastating to a person’s sense of self and their cultural identity. Entertainer Michael Jackson reportedly began wearing his trademark sequin glove to cover vitiligo patches on his hand.
Devastating social and psychological effects
Ganesan is passionate about treating the disease, not just because of its medical implications but also because of the damage it wreaks on the social and psychological lives of sufferers.
“One of the toughest and most rewarding experiences is the patient’s first visit,” he says. “Patients with this disease suffer in silence — they cover the spots, which can often itch or burn, and deal with medical providers who tell them there is nothing they can do.
“There are a lot of tears on that first visit — tears when I tell them they are not alone, tears when I tell them others share the same devastating psychological effects and tears when I tell them that treatments can be long and that the disease is chronic.”
Ganesan refers some of his patients to a counselor or psychologist to help with the sometimes severe depressive symptoms. He also stresses that there is hope, that therapies do work but they take time, both to find the right combination for each patient and to take effect.
“One of the most rewarding things is when patients do get better, their mood seems to improve as well,” says Ganesan, who is conducting a study to assess whether psychological symptoms and quality of life improve for people with vitiligo after light treatment.
Building a vitiligo support system
Many of the dermatologist’s patients have formed the OC Vitiligo Support to share experiences and support each other at regular meetings, where he serves as physician advisor. He and the group also work to highlight national and international efforts to raise awareness and combat vitiligo, including the upcoming World Vitiligo Day on June 25.
Later this summer, UCI Health will expand vitiligo and pigment disorder treatment efforts at the Beckman Laser Institute & Clinic on the university campus in Irvine.
“It will be the place in Orange County where patients with vitiligo and other pigmentation issues can get the best care,” Ganesan says.