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The VSI Board of Directors and I have very exciting news to share with you! Sincerely,
I decided the best way to introduce myself to you was to write from my heart. And, hopefully you will be able to capture a little bit of my personality through these next few paragraphs. I have dedicated my working career to nonprofit patient advocacy helping individuals, families, and their caregivers. I strongly believe that all patients should have access to reliable When living with a chronic disease, patients should be empowered to be active participants in research and have the opportunity to engage with a community who understands and relates to the same issues and concerns. The key to the overall success at VSI is developing and sustaining relationships with the stakeholders of the organization as well as providing an infrastructure to advance the mission. I’m honored that Jackie and the board have chosen me for this new role and I look forward to engaging with this amazing community. Please look forward to more communications from me in the very near future.
Warm regards, To send Jean an email: Click here
Which Treatment? Which Doctor? If you recently developed vitiligo, are seeing a doctor for the first time, or maybe a new or different doctor, you likely have a lot of questions. Whether you are one of the lucky ones who happens to have a vitiligo specialist in your area, or, if you are seeing a dermatologist who’s never treated a vitiligo patient, there are things you can do in advance of your appointment so that you and your doctor get the most from the time you have together. One of the first, and most important steps you can take is to educate yourself about vitiligo and current treatments so that you’ll know what your options are and which treatment/s might work best for you and your lifestyle. Treatment Background Generalized vitiligo, the most common type, is an autoimmune disease characterized by patchy light colored areas of pigment loss on the skin, caused by the body’s immune system mistakenly attacking and killing the pigment-making cells, known as melanocytes. Most vitiligo treatments fall into one of two categories:
There are 3 primary types of treatment used for repigmentation.
Treatments and Expectations Topical treatments: (ointments and creams) Mid - to super-high-potency topical steroids are suggested as the initial therapy for limited vitiligo (<10 percent of the total body surface area) and are used once daily for two to three months, followed by a one month rest. Click here to view a topical steroid potency chart Light Treatments: Treating two to three times per week on non-consecutive days is considered optimal by most. Depending on the area of the body and degree of depigmentation, treatments can take from 6 months two years. Because research indicates no increased risk of cancer from NB-UVB, there are no recommendations for a maximum number of treatments. This treatment may be used in a physician’s office, or, with a doctor’s prescription, home-light units may be purchased to use in the convenience of your home.
UVA/PUVA: Many years ago UVA light was combined with a chemical product, called a psoralen (which increased the body’s light sensitivity) for a treatment known as PUVA. Due to the many side effects, including skin cancer, this treatment has mostly been replaced by NB-UVB. Surgical Procedures: The best candidates for surgical therapies are those with stable segmental or localized vitiligo, or non-segmental vitiligo on stable areas that are difficult to treat, such as hands and feet, that have not responded well to mainstream treatments.
Surgical therapies involve transplanting functional melanocytes (pigment cells) to de-pigmented areas, using methods such as tissue grafts, cellular grafts, or cellular transplantation. Stability is generally defined as having no new lesions, no Koebner phenomenon (spreading as a result of skin trauma) and no spreading of current lesions in the previous 12 months. Depigmentation Therapy: For those with extensive pigment loss that has not responded well to above therapies, depigmentation of the remaining pigment is an option. This therapy uses a topical medication called monobenzyl ether of hydroquinone (monobenzone). This is a systemic treatment, meaning that it will cause depigmentation both locally (where applied) and remotely (on areas where not applied). Monobenzone can be applied once or twice daily, beginning with the exposed areas. If a rash occurs in more sensitive areas, like the face, it can be continued on other less sensitive areas. Remote areas not receiving the medication will begin lightening after 3 to 6 months. Therapy typically begins with monobenzone 10%. If that is well tolerated for the first month, the therapy can be increased to 20%. Depending on the individual, complete depigmentation may take from one to three years. Side effects include contact dermatitis (rash), itching, and dry skin. VSI has a very active Depigmentation forum where members discuss their depigmentation journey. This forum also provides information on pharmacies that can make and ship monobenzone. Treatment Considerations: Area and Amount of Involvement The effectiveness and risk of a vitiligo therapy is directly related to the size of the treatment area(s). For example, a therapy that is very effective in repigmenting small areas of your skin may be much less effective treating large areas, and may also pose more risk. Topical steroids are a great example of this type of therapy. Generally, the rule of thumb for the physician is that depigmentation involving 10% or less of the BSA is treated by a topical therapy. Combination therapy with a topical and light is usually considered when more than 10% of the skin is depigmented. Generalized depigmentation of more than 50% of skin may best be treated by depigmentation therapy. Age of Patient A patient’s age can affect selection of treatment. For example, though high-strength topical steroids have been reported to be effective in children, less potent steroids are often preferred in children under the age of 10 to minimize risk. A systemic steroid would not be used in a child. Date of Disease Onset Some therapies work best when used early/soon after disease onset. Topical steroids, for example, are considered to be most effective on small, newly de-pigmented areas, especially those on the face and neck. Disease Activity If the vitiligo is spreading quickly with widespread pigment loss, it may be necessary to use some type of systemic treatment to stabilize the vitiligo. Some physicians recommend low-dose oral corticosteroids such as prednisone, oral mini-pulse therapy with dexamethasone, or intramuscular triamcinolone; however, the response is better when used as an adjunct therapy to NB-UVB. Emotional Component and Quality of Life The emotional stress of vitiligo can have a very direct impact on the quality of life and should be taken into account. Even a small percentage of involvement can cause a great deal of emotional stress, particularly if more visible areas are affected. Under these circumstances, a doctor may consider a treatment prescribed more often for widespread vitiligo, such as a combination of a topical and light. Location of Vitiligo Generally, results of any treatment are better on the face and neck, followed by the trunk, upper arms, and upper legs. Feet and hands are among the most difficult to treat. Topical creams or ointments and light treatment are often prescribed for the more responsive areas. Surgical options can be considered for the less responsive areas. Time Investment, Cost, and Insurance Coverage Though the situation is vastly improved in recent years, some insurance companies will still try to use excuses for denial of coverage, such as the treatment being considered cosmetic, or experimental. If you have trouble obtaining insurance coverage, contact VSI and provide the reason the insurance company provided as reason for denial, and we can provide documentation to help. If you do not have insurance, you can ask your doctor for recommendations on receiving a reduced rate so that you can afford the treatment. Lifestyle Light treatments are typically prescribed to be used 2 or 3 days a week for several months or longer. It can be quite difficult to interrupt daily schedules (job, school, parents with young children, etc.) to go to a doctor’s office three days a week during office hours. After establishing a positive response from light treatment, you could discuss the possibility of your doctor writing a prescription for a home light unit. Research has shown that those with home light units often have better outcomes because of the ease of use, as well as reduced long-term cost. With or without insurance, having a home light unit removes the cost of office visits and co-pays. Underlying Conditions: If a person has lost quite a bit of pigment in a very short time, it may be necessary to determine and treat the cause. Some underlying conditions frequently seen with vitiligo are autoimmune thyroid disease, type 1 diabetes, rheumatoid arthritis, celiac disease, and vitamin D deficiency.
Background Information for Your Physician
Disease History
Family History: Have you or anyone in your family experienced any of the following:
Treatment History/Experience: If you previously used a vitiligo treatment.......
Diagnosis and Evaluation Procedures:
Many doctors will order laboratory tests to assist his/her evaluation of the vitiligo.
Antinuclear Antibody (ANA) - helps determine if the patient has other autoimmune diseases. Complete Blood Count (CBC) with differential Comprehensive Metabolic Panel: Research has shown an increased risk of those with vitiligo Thyroid panel tests listed below: The risk for those with vitiligo of developing autoimmune thyroid disease (AITD) has been found to be 2.5 times higher than in the normal population.
OR
25-Hydroxy-Vitamin D - also known as 25(OH)D:Vitamin D is an area of deficiency for many vitiligo patients. Folate/B12: Research has found that many vitiligo patients are also deficient in B12 and folate. Treatment Questions:
Finding a Doctor Now that you’ve done your homework and are ready to make an appointment, if you don’t have a vitiligo specialist nearby, what can you do? Although any doctor can write a prescription for a vitiligo treatment, typically skin conditions like vitiligo are seen by a dermatologist. However, in many smaller cities it can be quite difficult to find a dermatologist who is taking new patients, and those that do, can have waiting times of 6 months or longer for an appointment. If this happens, be sure to ask if they have a “cancellation list” to which your name can be added. If they do not, then ask the best time to call each day to check for cancellations. Another problem frequently encountered is that a great number of dermatologists have outdated beliefs and/or information on the safety and efficacy of current vitiligo treatments, and will not prescribe them. VSI has a “Doctor Search” which, after logging on to your account, can be accessed from the Community tab. The doctors on this list have been seen by VSI members who liked them and submitted their information. If you locate a doctor listed near you, open their page to see if the treatment you are seeking is listed. You should always double check when you call the office to be sure the information is still accurate. If you do not see a doctor listed near you, this does not mean there aren’t any vitiligo knowledgeable doctors in your area, just that none have been submitted to VSI. Your next step would be to use a computer search with words like vitiligo dermatologist, and your city. If that also is unsuccessful, just begin calling dermatology offices and ask if any of the doctors have treated vitiligo patients, and if so, which treatments they prescribe. If you still haven’t found a dermatologist who has treated other vitiligo patients, you can contact VSI for peer-reviewed information on vitiligo treatments to print and take with you.
Calling all Medicare Vitiligo Patients!
Part of the problem is that currently there is no accepted standard for coverage of vitiligo treatments. Each company has their own policies and guidelines, many times based on outdated and incorrect information. What most people may not realize is just how much private insurance coverage can be affected by Medicare policies. Over 55 million Americans are now covered by Medicare or Medicare Advantage, making it the nation’s largest health insurance program. Consequently, many, if not most, insurance providers establish their baseline standards and procedures to follow the Medicare model. We have been in touch with Medicare and have been told that if we can provide a Medicare letter of denial for a vitiligo treatment, then they will try to help us set a standard of coverage. If you are reading this newsletter and you, or someone you know, was denied coverage for a vitiligo treatment by Medicare, please contact VSI immediately. You could help make a difference for future insurance coverage for ALL vitiligo patients! Click Here to Contact VSI
What's On Your Mind? Q. I have vitiligo on my hands, arms, and legs and in the summer the contrast makes the vitiligo even more noticeable. I really need something to help even out the color. I tried some self-tanners but they turned the vitiligo an orangey color which looked very unnatural compared to the rest of my skin. Can you recommend a product or technique I could use to help make these areas less noticeable? Dihydroxyacetone (DHA) and Sunless Tanners
Highlights of recently-published medical Home Phototherapy for Vitiligo Researchers and clinicians from Henry Ford Hospital in Detroit, MI and from Medicine Siriraj Hospital in Bangkok, Thailand published an article about the safety and efficacy of home phototherapy using narrowband UVB (NB-UVB) in an effort to dispel misconceptions and increase awareness and use of this vitiligo treatment. When compared to PUVA, NB-UVB is as effective (with far fewer adverse side effects), produces a better repigmentation color match, and has a faster rate of repigmentation. However, due to the long-term time commitment and associated costs, its use in physicians’ offices has been somewhat limited. An alternative, home phototherapy, is a far more convenient and cost effective option, but often underutilized due to a lack of physician training and experience, as well misconceptions regarding safety and efficacy. Safety Physicians cited safety concerns as a primary barrier to prescribing home phototherapy. However, multiple studies have shown that when patients are properly educated on its proper use, adverse side effects are quite low and similar to those experienced in-office, such as the skin getting too red, burning, dryness, and itching. Home therapeutic devices can be equipped with safety measures to prevent over-use side effects. These features include controlled prescription timers, that allow a fixed a number of treatments, after which a new code from the patient’s physician is required; timers limiting the length of treatment; and electronic data loggers enabling physicians to track patient usage and adherence. The authors also pointed out that the patients at highest risk for side effects from a home light unit are those who purchase light units independently and self-administer without medical oversight. Efficacy A perceived lack of efficacy was found to be another significant barrier to physicians prescribing home phototherapy. “55% of 367 surveyed dermatologists believed that in-office phototherapy was superior to home phototherapy.” However, previous studies indicate that home phototherapy is equally effective as in-office therapy and decreases the patient burden, resulting in greater compliance. Patients who are good candidates for in-office phototherapy should be considered for home phototherapy. Requirements include motivation, ability to comply with instructions, and willingness to return to the clinic periodically for reevaluation. The authors concluded that based on current literature, home phototherapy is safe and effective and eases many of the hardships associated with in-office phototherapy, and should therefore be considered in the management of vitiligo. They cited “a knowledge gap on home phototherapy among many providers,” and recommended that further education be provided.
Zinc Deficiency and Vitiligo Over the years, a variety of research studies have noted an association between serum zinc levels and vitiligo, yet you do not often hear much about this connection. In April 2017, a group of Iranian researchers reported the results of a prospective cross-sectional study comparing serum zinc levels of 100 vitiligo patients to those of 100 healthy (non-vitiligo) controls. They noted that apoptosis (cell death) of melanocytes (pigment-making cells) is a primary cause of pigment loss in vitiligo. Because zinc is known for its anti-apoptotic properties, as well as being one of several micronutrients playing an important role in the process of melanogenesis (the production of melanin), they proposed the potential of zinc helping to prevent and/or control vitiligo. The results of their study showed significantly lower serum zinc levels in the vitiligo patients compared to the control group, which they felt highlighted the role of zinc in the development of vitiligo. They suggested conducting large-scale studies to confirm their findings and to determine the outcome of oral zinc supplements for vitiligo patients. ------------------------- Zinc and copper have a very close relationship and work best in the range of 8:1 to 12:1 zinc to copper ratio. When properly balanced, they work synergistically. However, the intake of one has a direct and inverse relationship on the other. In addition to exposure or consumption, factors such as stress or diet can reduce zinc levels, causing an increase in copper, and over time create an unhealthy imbalance.
Online Vitiligo "Selfie" Study!
Vitiligo Research Study in New York City.
Earn Funding for VSI with Amazon and eBay Online Shopping Can Benefit VSI!
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When Jackie asked me to write a brief introduction about myself for this newsletter, I had a lot of thoughts whirling around in my head. How can I express my excitement about being on the staff at VSI? How can my involvement directly impact VSI’s members who cope daily living with vitiligo? And, most importantly, how can I inspire the vitiligo community to give financially to help VSI move the needle towards an improved quality of life? 
Topical calcineurin inhibitors (tacrolimus and pimecrolimus) are often preferred (rather than the potent topical steroids) for patients with limited disease involving the face or other areas at higher risk for skin atrophy. They are applied twice daily, or can be used in combination with a topical steroid, applying each medication once daily.
Excimer Laser: Excimer uses a wavelength similar to NB-UVB,but delivers a targeted, narrow beam. It is very effective, but because of the size of the beam it is used to treat very small spots of depigmentation. Some doctors will begin with laser therapy for patients who have only a couple of very small areas of depigmentation. However, most doctors use laser for very small spots remaining after NB-UVB treatment.
Vitiligo treatments can not only be expensive, but they also take time and commitment. When you start a treatment, you need to be prepared to continue consistent use as directed by your physician, long enough to obtain acceptable results. Depending on the circumstances, it may take 3-6 months to even begin seeing results, and 1 to 2 years for optimal results.
DHA-based sunless tanners come in many different formulations, such as lotions, gels, liquids, sprays, mousses, wipes, and even airbrush applications, most of which can be purchased in drug stores, big box stores, and online. Some products offer both an immediate tint as well as DHA that will take longer to develop color. Spray tanning products and businesses have also become very popular, offering a wide range of choices from home airbrush systems to full body spray booths.
may use the terms “instant tan” or “tint” in addition to “bronzer.” Sometimes these products are combined in the same product with DHA, (check the label) giving you a level of instant coverage to provide extra camouflage, in addition to the color that develops over time and lasts several days. This can be particularly helpful for covering vitiligo. You can apply the tinted formula to the depigmented area either alone, if it matches the surrounding skin, or as a base using a heavier or repeated application to the lighter skin, then cover the entire area afterwards to blend together.
