While more than 70 million people around the world live with vitiligo, several myths and misconceptions persist about this disease—not only among the general public, but surprisingly, in the dermatologic and greater medical communities, too.
As dermatologists specializing in treating vitiligo and other pigmentary disorders, all too often we hear from our vitiligo patients that they were initially misdiagnosed by their primary care physicians, (or sometimes, their general dermatologists) or more commonly, they were told that there was “nothing that can be done” to help their condition.
In reality, there are many effective treatments and therapies that can help improve vitiligo, an autoimmune disease that affects males and females of all races, skin types, and ages, of whom up to 35% are children.
Dr Hamzavi, senior staff physician of the department of dermatology, Henry Ford Hospital, Detroit, MI, and co-founder of the Vitiligo Working Group (VWG) commented, “Ultraviolet phototherapy, topical creams and ointments, surgical grafting, and oral immunosuppressive medications all have been shown to help improve this condition.”
Dr Grimes, director of the Vitiligo and Pigmentation Institute of Southern California, Los Angeles, CA, clinical professor of dermatology at UCLA, and member of the VWG Board of Directors, said that she helps vitiligo patients cope by “using a multimodality approach.”
Dr Grimes, who was recently awarded the American Skin Association Research Achievement Award in Vitiligo and Pigment Cell Biology Research, explained, “It’s key to first assess the psychological impact of the disease. I determine whether we need a psychologist on our team. I’m always available to patients for emotional counseling and support. We have a mantra ‘you are not your white patch.’ I instill hope.”
For new vitiligo patients, the initial consultation involves a detailed history, a physical examination, and laboratory assessment. Then, the individualized approach to treatment will be based on the progression and severity of the disease. It will focus on improving the patient’s quality of life, stabilization of the disease, repigmentation, and establishing maintenance regimens if indicated.
Dr Grimes cited the following specific therapies that can be very successful for repigmentation of vitiligo:
- Topical steroids (medium to high potency)
- Calcineurin inhibitors (tacrolimus, pimecrolimus)
- Targeted phototherapy (Excimer Laser)
- Narrowband UV-B phototherapy
- Autologous grafting procedures
Dr Elbuluk, assistant professor at the Ronald O. Perelman Department of Dermatology at New York University, New York, NY, and chair of the VWG Social Media Dissemination Com-mittee, explained that the treatment plan she recommends to patients “often depends on numerous factors, including how much of their body is affected by vitiligo, how long they have had it, what treatments they have tried in the past, and what their treatment goals are. Once I have this information, I can formulate an appropriate treatment plan. I have seen many success stories with individuals who have undergone various therapeutic combinations.”
According to Dr Harris, director, University of Massachusetts Medical School Vitiligo Clinic and Research Center, assistant professor of medicine, dermatology division, UMMS, and member of the VWG Board of Directors, “There are good treatments for vitiligo, although they take time and commitment from patients to use them. I have many patients who are thrilled with their results, which erase the spots from their face and other areas, giving them confidence to go out without makeup.”
Helping Patients Cope
“Talking to others who have had vitiligo for a long time and hearing how they cope is a good way for patients to deal with this disease,” commented Dr Pandya, J B Shelmire Professor of Dermatology, University of Texas Southwestern Medical Center, Dallas, TX, and member of the VWG Board of Directors. “That’s why support groups are so important. Talking to physicians who know a lot about vitiligo also helps.”
Dr Rodrigues, co-founder of the vitiligo clinic, Melbourne and consultant dermatologist at St. Vincent’s and The Royal Children’s Hospital in Melbourne, Australia, who chairs the VWG Global Social Narrative Creation Committee added, “Listening carefully to a patient’s story is the most important aspect of helping patients cope with vitiligo. Understanding their perspectives is the key. I set realistic expectations and make myself available to help them navigate scientifically correct information and a treatment path that is right for them. Offering social support networks is also important and is something I am actively trying to build.”
“As dermatologists, we want to see patients getting diagnosed and treated earlier so that treatment can be more successful,” Dr Pandya noted. “Studies have shown that patients who have had vitiligo for less than one year have better results than those who have had it for longer. It’s important that we increase awareness of vitiligo in the public and train all doctors to recognize it so that patients can get treatment earlier.”
Not Just a Cosmetic Problem
A point of deep frustration for dermatologists and patients alike is the fact that many insurance companies still deny coverage of many vitiligo treatments because they wrongly consider it to be only a “cosmetic skin condition,” rather than recognizing vitiligo as a serious autoimmune disease which can be associated with many comorbidities, including thyroid disease, type 1 diabetes, pernicious anemia, lupus, rheumatoid arthritis, and cochlear dysfunction.
The VWG and other patient support/advocacy groups are seeking to change this by urging legislators and insurance companies to acknowledge vitiligo for what it really is—a systemic disease with a complicated pathogenesis.
“Vitiligo can be psychologically devastating and isolating and may carry a huge social stigma,” said Dr Rodrigues. “Some patients suffer from depression and anxiety, and may not want to engage socially or even go to work because of their condition. Some don’t even want to have children, as they are worried about passing on their vitiligo.”
Dr Hamzavi emphasized, “These are important quality of life issues that we need to improve through treatment. As dermatologists, we need to look beyond just the depigmentation and see the bigger picture.”
Hope on the Horizon
There are some new medications in development to treat vitiligo that may play an important role in the future to give dermatologists more choices for effective treatments.
According to Dr Harris, “Recent research has defined a key pathway responsible for driving the disease, and we have identified a number of new treatments that may be able to reverse it. A few small studies have demonstrated promising results in a small number of patients. But we need to do more research to bring these treatments into the clinic.”
These potential breakthroughs include the synthetic analogue known as afamelanotide, and a class of immune-suppressing medication called Janus kinase inhibitors that interrupt interferon gamma signaling.
Dr Harris commented, “We think that we are getting much closer to targeted immunotherapy for vitiligo patients, but more research is needed to determine the effect of these new medications on associated comorbidities.”
Armed with a better understanding of how the immune system attacks pigment cells in vitiligo, there is indeed hope on the horizon. VWG colleagues agree that “this is an exciting time for those of us who see and treat patients with vitiligo.”
Making a Difference
The dermatologic community can help make a difference to people living with vitiligo in a variety of ways:
- Recognize vitiligo and refer individuals with vitiligo to vitiligo specialists for treatment
- Help raise awareness by sharing the facts about vitiligo, and the VWG’s award-winning video, Vitiligo: Truth, Hope and Change which can be found on the VWG website, www.vitiligoworkinggroup.com
- Donate to research to find better treatments and hopefully, a cure. For more information, visit http://bit.ly/1Nx2yBx
Disclosure: The authors report no relevant financial relationships.