Summer Newsletter 2020 | Vitiligo Support International

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In This Issue

Director's Message:
Where Are We Now?

Organization and Campaign Update
Support VSI

Fun in the Sun with Vitiligo!

Medicare Coverage for
Vitiligo Treatments

What's On Your Mind?

Medical News Updates

Research & Clinical Trials

Bibliography and Sources

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and Earn Funding for VSI


VSINow Visit VSI
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View Past Newsletters

VSI Medical and Scientific
Advisory Committee

  • Pearl E. Grimes, M.D., Committee Chair
  • Ted A. Grossbart, Ph.D.
  • Sancy A. Leachman, M.D.
  • I. Caroline Le Poole Ph.D.
  • Mauro Picardo, M.D.
  • Nanette B. Silverberg, M.D.
  • Richard A. Spritz, M.D.
  • Alain Taieb, M.D., Ph.D.
  • Wiete Westerhof, MD, Ph.D.

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Vitiligo Support International
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Message From the Executive Director

VSI

Dear VSI Members, Friends, and Donors,

It seems like a lifetime has passed since the message I wrote for the Spring newsletter when COVID-19 was beginning its epic spread. I don’t think many of us could have imagined the turmoil the world would be facing in the months that have followed. We’d never even heard of terms such as “social distancing.”

Who could have imagined that we’d still be wearing face masks and scouring the planet for personal-hygiene paper products and sanitizing/antibacterial commodities of any make or variety?

FYI
The FDA advises consumers not to use hand sanitizer products made by Eskbiochem.
Click here for a complete list of products to avoid

We all longed for the lifting of the quarantine, yet, even as the quarantine restrictions are being lifted, the news reports that many citizens remain reticent to venture out. Donning our face masks, my husband and I have (cautiously) been out to several restaurants amid the various phases of quarantine, and for the most part they have been like ghost towns.

I’m OK with the social distancing, but find that I forget. Do you do that? When I’m shopping in a grocery store I catch myself wandering straight up to the meat counter and forgetting that we now have to jockey for position to select a package of hamburger (when you can find it) or chicken. Or, the opposite is sometimes the case, when there are so many people in a confined area like the produce department, that rather than taking my time to find just the right fruit or veggie, I just grab something and run so I’m not holding others up. I’ve thrown out more rotten produce in the past 6 weeks than I have in a lifetime.

Through it all, my greatest hope has been that all of you in the VSI community have stayed safe and well, and suffered minimal loss and disruptions. My heart has been heavy with all of the sadness and strife in the world. I’ve often heard that those with vitiligo are more compassionate than average. We understand that though our skin may appear different, we are all the same on the inside. We all want, need, and deserve, to be loved and respected.

Sincerely,

Jackie Gardner
Executive Director

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Organization Update

Even with several meetings canceled this spring, VSI has stayed very busy over these past months. I thought it might be a good time to share with you the type of work going on in the background, supported by your generous donations.

Patient Support

Long known as a leader in patient support, VSI continues to receive daily requests from all around the globe for support services and resources. Though our financial bandwidth may be limited, in many cases our professional networking capabilities enable assistance, such as the instance below..

Request for Support from South America

“Hello my name is (name withheld for privacy) from Medellín Colombia.

I'm writing to you because one of my employees' 12 year old child has vitiligo.

We are looking for some support to help her due to her psychological symptoms which are already present in her life.

They are a very low income family and we are trying to find some professional help in Colombia who can help us or a non-profit organization who can give us some directions in this case.

I would be very grateful if you could help me out with this.”

Though our resources are limited in this part of the world, VSI was able to provide the name and contact information of a leading vitiligo researcher who practices several hours from Medellin. Often these contacts can provide the names of others in their network closer by.

We also explored search engines and databases for references and abstracts on the topic of vitiligo research being conducted in the Colombia area. We were able to provide this gentleman with the names of 5 physicians who were active in vitiligo research in his local (Medellín) university.

In order to report current research, VSI conducts ongoing communication with researchers, scientists, and industry leaders, such as pharmaceutical representatives. Research cannot be carried out without volunteer participants. Though we long for the day that our funding level is such that we can support research financially, we do our part by providing recruitment assistance, such as with the listings below in this newsletter.

VSI is also frequently called upon as a consultant to provide feedback to entities such as the pharmaceutical companies considering investing in vitiligo treatment products. Before they commit millions of dollars into either a new treatment, or an existing treatment for a new disease or condition, it is imperative that they understand the condition from the patient’s point-of-view.

What They Want to Know......

What are the most important criteria when considering a treatment?

How long are patients willing to use a treatment before seeing results?

How much pigment must be regained to consider a treatment a worthwhile investment?

Are patients willing to make office visits as part of a treatment?

What percentage of patients are willing (or not) to participate in procedures such as
dermabrasion or skin grafting?

VSI’s global outreach and vast membership database, combined with our patient recruitment services, puts the organization in a unique position of not only having a true understanding of the patient’s point-of-view, but being a conduit between the patient and the professional community.

Advocacy

You may recall VSI’s announcement regarding the “First Ever FDA-Planned “Patient-Focused Drug Development Meeting for Vitiligo” scheduled for 3/20/20, but canceled due to COVID-19.

Part of this meeting involved vitiligo patients submitting impact statements to the FDA so that they might better understand just how devastating this disease can be. However, these statements apparently fell between the cracks once the meeting was canceled.

On May 26, 2020, the American Academy of Dermatology (AAD) reached out to VSI requesting our assistance in recruiting individuals to submit their personal impact statements to the FDA. The deadline was midnight 6/1/20, and only 3 responses had been submitted.

When VSI announced the meeting cancelation, we set up a poll for interested parties to provide their contact information to receive future information about the meeting.

We quickly prepared an announcement about the FDA impact statements, and emailed it to these individuals, and also posted the information on our Facebook page.

After the first 24 hours, we were notified by one of our members that the links we’d been provided had changed on the FDA website. We quickly tracked down the new pages, re-emailed all prior recipients, and posted the new links to Facebook.

Way to Go Folks!

I am Proud to Report the Count as of the Midnight June 1, Deadline:

51 responses!

Click Here to Read Some of the Impact Statements.

 

Educational Support

VSI receives a wide range of requests for information, resources, and support on a daily basis. Questions about current treatments, locating a physician, and topical subjects such as underlying conditions associated with vitiligo, are among the more common. Others require a great deal more time, such as those from students involved in vitiligo projects seeking assistance and information.

Recently we received a request for assistance from a student working on a vitiligo project exploring the theme of “self-acceptance.” She was seeking feedback regarding personal journeys, experiences, and ability/inability to accept the condition. This undertaking was a bit more complicated due to the student requiring a fair amount of educational and instructional guidance herself.

In the end, VSI dedicated nearly 30 hours of assistance to this student. We posted the information on VSI’s Facebook page and were able to recruit nearly 40 responses to support this student’s research project. If you are interested in reading some of the experiences reported, click here.

VSI's most recognized educational resource
is the newsletter you are reading.

Circulated to our entire worldwide membership, VSI’s quarterly newsletters bring the very latest information available including research, clinical trials, medical news updates, and answers to questions we receive from you!

Each edition is a massive undertaking in time and manpower. Have you ever taken a look at the provided Bibliography and Sources? This newsletter cited 31 sources, and there were probably another 20 sources consulted, but not used in the final copy. Nearly 200 hours were invested in the development of this newsletter. Do you find these newsletters helpful?

Funding Report

We’ve been so touched by the notes we’ve received from our members checking in to see how VSI has been managing during the pandemic. With so many closings, furloughs, and lay-offs, nonprofits like VSI have definitely taken a hit. But we’re all in this together. We understand charity being redirected to those in dire need of basic necessities such as food and shelter.

Though we’ve experienced a 33% decrease in the actual number of donations, thankfully, due to some of our most dedicated donors, and matching gifts, we saw an increase in revenue of $2,005 over the first quarter!

Hats Off to VSI's New First Time Donors!

Craig Brenner
Cindy Garcia
Kristin K.
Christina Oglebay
Jeesha Patel
Jennifer Polk
Mike Saunders
Matthew Stacey


Also Matching Gift Donor - Member since 2010
Also Matching Gift Donor
Also Recurring Monthly Donor - Member since 2007

New VSI Board Member


 

Matching Gifts

A Large Part of VSI’s Second Quarter
Income was Attributed to Matching Gifts.

Matching gifts are charitable corporate donations that match employee gifts to eligible nonprofits.

About 91% of companies match their employee’s exact donation amount $1:$1.

About 5% of companies match at a higher rate.

Thousands of companies worldwide and 65% of Fortune 500 companies offer matching gift programs.

 

Does your company offer matching gift donations?

VSI Thanks the Following 2020 Donors
Whose Matching Gift Contributions Totaled
$7,583.86

Laurie Basch
Aimee Boucher
Monique Henry
N.N.
Sherwin Tolentino
Scott Alexander

Mark Hickey
Cindy Garcia
Mario Morales
Trisha Szto
Kristin K.

VSI would be happy to provide any required information,
or assist in any paperwork involved in the process.

 

Recurring Donations

This quarter we’d like to shine the spotlight on recurring donations!

VSI depends on recurring donations to provide a reliable stream of monthly income. This source of revenue is more stable, providing a safeguard during seasonal and/or environmental slumps.

VSI now has a total of 35 recurring donors, pledging amounts from $2 to $50 monthly.
We gained only one new recurring donor during the second quarter.

Christina Oglebay!

This donor group currently brings in nearly $650 a month.

We’d like to set a third quarter goal of increasing
our recurring donations to at least $1,000 a month.

That’s only $350 more dollars per month.
I Know We Can Do This!

 

Please Will YOU Join this Effort?
Every Dollar Counts!

Recurring Monthly Donation One-Time Donation

 

 

 

 

Fun in the Sun with Vitligo

VSIAs I’m writing this article, I am preparing to go out to dinner, with real people, in a real restaurant, for the first time in 8 weeks! Woo-hoo – right? I am definitely looking forward to it. No idea what to expect, but at the same time, when quarantine first began, it was cold outside. Fast forward 8 weeks and now it is 80 degrees. As a vitiligo patient, seasonal changes can require adjustments beyond jumping into seasonally appropriate clothing.

I have had vitiligo for 30 years, and have emotionally adjusted to it fairly well, but it definitely still impacts my actions and decisions on a daily basis. Unwanted stares, questions, and comments can create difficult social burdens for those with visible skin disorders, particularly with conditions like vitiligo, alopecia, and psoriasis that are unpredictable in their progression. Acclimation to changes can take weeks, months, or longer, then if there is progression and appearance changes, the adjustment period begins again.

VSI

As the cold weather fades into spring, many people begin to notice pigment loss developed during the winter months. If you discover newly depigmented areas on your legs, are you comfortable wearing short-sleeved shirts, shorts, skirts, or short capris pants? How about going barefoot or wearing sandals if you’ve developed pigment loss on your feet?

Click here to take a 5 question poll on how seasonal changes affect you.

Each year around this time, VSI begins hearing from members lamenting the onset of warmer weather and increased opportunities for outdoor activities. Clothing choices and camouflaging bring challenges with more of the body exposed. Participating in summer activities such as swimming, biking, and water-parks, or even hiking, and picnics, all sound like fun ways to spend time with friends. However, these very opportunities can trigger anxiety for those with skin conditions.

Emotional Adjustment Period

VSI Each person must develop their own coping mechanisms. Some have adapted to a point where they make no effort to conceal their differences, while others adopt lifestyle choices including clothing and/or corrective cosmetics to feel comfortable in social situations. However, the negative emotional impact remains quite heavy for many, who self-limit social interaction to the point of isolation.

Research has identified several educational and psychological techniques to help identify stress triggers and improve coping methods. One of the most successful methods is cognitive behavioral therapy (CBT), which is a short-term, goal-oriented therapy that uses a hands-on approach to improve self-esteem and body image.

Learn more about coping strategies.

Does Vitiligo Cause Increased Risk of Skin Cancer

VSIAnother area of concern for those with vitiligo is the misinformation that so many have read online, or unfortunately, even received from their physicians - the myth that by virtue of having vitiligo, you automatically have an increased risk of skin cancer, and should avoid any and all exposure to sun.

Multiple studies, going back to 2010, have not only discredited that theory, but have gone on to assess the risk of skin cancer in those with vitiligo to be three times less than the normal population. Consequently, while those with vitiligo still need to protect their skin from the sun the same as the rest of the world, there is no need to change or avoid the outdoor summer activities previously enjoyed. In fact, some doctors permit, and/or prescribe, sunlight (in moderation) for their vitiligo patients when a prescription light source is not available. Click here to print a research article to take to your doctor.

What About Sunscreen for Vitiligo?

VSI

VSIAnother question VSI frequently receives is about the best type of sunscreen to use for vitiligo. Similar to the information above, having vitiligo really doesn’t require a different type of sunscreen.

One consideration that is somewhat unique to those with vitiligo, is that even when using sunscreen, many people report that the more time spent in the sun, the more likely you are to develop a greater contrast between your natural skin tone and depigmented areas. This may be due in part to not properly following sunscreen application directions, which is discussed in greater detail below.

What You Should Know About Sun Exposure

Unprotected, overexposure to ultraviolet (UV) rays can lead to serious health problems including multiple types of skin cancer and premature aging of the skin, as well as cataracts and other eye damage.

According to the Skin Cancer Foundation

Skin cancer is the most common cancer in the world.
One in 5 Americans will develop skin cancer by the age of 70.
More than 2 people die of skin cancer in the U.S. every hour.

The Good News
Skin Cancer is the Most Preventable Cancer!

According to the American Academy of Dermatology

VSI
  • You should choose a broad-spectrum sunscreen, (protects against UVA and UVB rays) that is SPF 30 or higher, and water resistant.
  • Apply to dry skin 15 - 20 minutes before going outdoors.
  • Apply enough sunscreen to cover all skin that clothing will not cover.
    For most adults that is about 1 ounce, or enough to fill a shot glass.
  • Don't forget to apply to the tops of your feet, your neck, your ears and if
    exposed, the top of your head.
  • When outdoors, reapply every two hours, or after swimming or moderately sweating, according to the directions on the bottle. This applies even when using water-resistant sunscreen.

What About Spray Sunscreens?

VSI

Noting the popularity of spray sunscreen due to the lighter feel and quick and easy application, Dr. Mona Gohara, Associate Clinical Professor of Dermatology, Yale University School of Medicine, offered the following recommendations:

Do not spray on face. The ingredients contain lung irritants. Instead, spray on hands and rub on face.

Do not use on children: The likelihood is too high that they will inhale the mist.

Hold the nozzle close to the skin and spray generously. Spray sunscreen also takes about 1 ounce to cover the body of an adult, which is difficult to assess. Spray until all of the skin glistens.

Rub it in thoroughly. Even if the label says “no rub” you should still rub in for at least 10 seconds to ensure an even layer of coverage.

Sunscreen Labels are so Confusing!

There are two basic types of sunscreen:

Chemical and Physical

VSI

Chemical sunscreens, which include compounds such as oxybenzone and avobenzone, filter UVA radiation. Octocrylene, homosalate, and octisalate help stabilize and provide UVB protection. They are considered organic filters and work by absorbing the UV rays as they try to enter the skin.

Pros:
Are generally thinner and spread more easily

Cons:
Must be applied 20 minutes before UV exposure.
The combination of multiple ingredients more apt to cause rash and skin irritation
The higher the SPF, the higher the risk of irritation
More likely to clog pores for oily skin

Physical sunscreens contain mineral compounds (inorganic filters) such as zinc oxide and titanium dioxide, and protect your skin by sitting on top of the skin and deflecting UV light.

Pros:
Are naturally broad-spectrum, protecting against both UVA and UVB rays
No waiting period. Protects skin from sun exposure as soon as it’s applied.
Lasts longer in direct UV light, (but not when wet or sweating)
Less likely to cause skin irritation
Less likely to be pore-clogging, so a better choice for acne-prone skin

Cons:
Rubs, sweats, and rinses off easily, requiring more frequent re-application when outdoors
More apt to leave a white film, making some formulas undesirable for medium to dark skin tones

But I Used Sunscreen and Still Burned?

VSIMany times we hear from our members who say they’ve tried various sunscreens and none worked, or worked well. As mentioned above, some complain that even when wearing a SPF 50, they still get enough tan to accentuate the contrast between the vitiligo affected skin and their normal pigment. Others have even reported burning when wearing a SPF 50 sunscreen.

How Much Sunscreen are You Using?

A wide range of research studies have shown that the majority of people do not apply, or reapply, sunscreen correctly, with the vast majority typically applying only 25-to-30% of the recommended amount of product.VSI

In order to achieve full SPF protection, you need to apply two milligrams of sunscreen per centimeter squared of skin (2 mg/cm 2). For most adults that is about 1 ounce, or enough (as shown above) to fill a shot glass. So, if you were to apply only .75 mg/cm 2 of SPF 50, your level of protection could drop to the protection level of SPF 10. Also, as mentioned above, if using a chemical sunscreen, it must be applied to dry skin 15 – 20 minutes before UV exposure.

Sunscreen Sabotage:
How to Apply and Reapply

In addition to underutilization of the product, another prevalent problem resulting in significant reduced efficacy is adherence to the actual application and reapplication guidelines.

As the saying goes, when all else fails, read the instructions!

Chemical sunscreens must be applied to dry skin 15 to 20 minutes prior to UV exposure. The very best sunscreens last only 2 hours under optimal conditions. Swimming and sweating degrade the formulas far more quickly, requiring reapplication in as little as 45 minutes to an hour. And, as previously noted, if using a chemical sunscreen, it needs to be reapplied to dry skin, giving it ample time to absorb into the skin before getting back into the water.

Are Higher SPF's Worth the Price?

VSI

For many years, the experts have somewhat dismissed the higher SPF’s, for a couple of reasons:

1. They worried that the higher SPF’s, would give people a false sense of security thinking that they were impervious to the sun’s damage by wearing the higher SPF.

2. They noted that the difference in the level of protection between the lower vs higher SPF was minimal compared to the increase in price.

SPF 30 blocks nearly 97% of UVB radiation
SPF 50 blocks about 98%
SPF 100 blocks about 99%

However, with all of the current research on the underutilization, there seems to be a bit of reversal on this line of thought. They’ve found that when applied/reapplied in the lesser amounts typically used by consumers, that the higher SPF’s meet the minimum standards of skin cancer protection.

What about sunscreens that contain insect repellants?

Sunscreens with insect repellants are discouraged for two reasons

1. Sunscreens should be applied liberally and often.

2. Insect repellant should be applied sparingly and less often than sunscreen.

 

I Went to the Beach ….
Then got a Sunburn 2 Days Later!

Beware of Photosensitizers!

We are surrounded by a wide variety of products, plants, foods, and other substances containing chemicals that when used orally, topically, or by injection, in conjunction with sunlight or artificial ultraviolet light, can change how our skin reacts to the light. Those that sensitize skin to ultraviolet light can cause a phototoxic or sunburn-like reaction on the skin.

Many medications can be photosensitizing, such as antibiotics and oral contraceptives, as well as ingredients found in cosmetics, such as alpha-hydroxy acids (AHA). Some of the most potent photosensitizers are essential oils, such as bergamot, ginger, lemon, lime, mandarin, orange and verbena.

There are two types of photosensitive reactions: phototoxic, the more common, generally appears within 24 hours of UV exposure, and is usually limited to the skin that has been exposed.

The other type, photoallergic, can develop any time between one and three days after exposure on the exposed skin, or may extend into areas that were covered, and can result in itching, rashes, blisters, red bumps or lesions.

Common Photosensitizing Drugs and Medications

Arthritis medications
Anti-arrhythmia drugs
Anti-seizure medications
Birth control medications
Blood pressure medications
Prednisone

Tranquilizers
Sulfur-containing drugs
Antidepressants
Antibiotics
Antihistamines
Coal tar

OTC pain relievers or anti-inflammatories

Click here for Additional Information on Managing Your Skin's Reaction to Light

Click here for a more extensive list of photosensitizing medications and substances.

Concerns About Sunscreen Safety

For many years, with limited and/or outdated research on potential health effects from the absorption of some of the ingredients into the bloodstream, the Food and Drug Administration (FDA) guidelines advised only that as long as systemic absorption of a sunscreen did not exceed the blood plasma concentration threshold of 0.5 ng/mL (nanograms per milliliter) at maximum usage, then additional nonclinical toxicology studies could be waived.

However, a couple of recent studies have taken a closer look, and the preliminary findings spurred the FDA to issue a proposal to update the regulatory requirements for sunscreen safety.

One study published in January 2020 was carried out to determine the amount of systemic absorption of 6 active ingredients commonly found in commercially available sunscreen products.

Avobenzone, Oxybenzone, Octocrylene,
Homosalate, Octisalate, and Oxtinoxate.

Sunscreen was applied at the recommended dosage to about 75% of the body, which is roughly the area of exposed skin outside of swimwear. The sunscreen was applied once on day one, and 4 times (every two hours)
on days 2, 3 and 4.

This study not only found that all 6 of the active ingredients exceeded the FDA threshold of 0.5 ng/mL required for potentially waiving additional toxicology studies, but the levels were exceeded on day 1, after only a single sunscreen application.

As part of the FDA’s regulatory update, they’ve asked sunscreen manufacturers for additional safety and toxicology data for 12 sunscreen active ingredients to determine if they meet the criteria for a product to be designated as “generally recognized as safe and effective” (GRASE) for its intended use.

According to the FDA

The only two sunscreen ingredients that meet GRASE criteria are:

Zinc Oxide and Titanium Dioxide


So, is Sunscreen Safe to Use, or Not?

The authors of the above study acknowledged several limitations
to their study findings which impacted their findings:

1. The study was conducted indoors, so there was no degradation of product due to sun, water, or sweat.

2. Participants used the product maximum recommended amount of sunscreen.

All experts, including the authors of the study, advised:
These findings do not indicate that individuals should refrain from the use of sunscreen.”


VSITrevan Fischer, M.D., a surgical oncologist at John Wayne Cancer Institute at Providence Saint John’s Health Center in Santa Monica, California, reminds us that the porous nature of skin allows all kinds of topical ingredients to sink in, from anti-aging serums to moisturizers. He provided the example of an Epsom salt bath, explaining that the reason it works to get magnesium into your system is because it soaks in through your skin.

The Best Level of Protection

VSIVSI In closing, it’s important to note that all experts advise that sunscreen is only one part of the best defense against the sun’s UV rays. It is recommended whenever possible that in addition to sunscreen you should cover exposed skin with clothing (including a sun hat and sunglasses).

There are a great many sun protective clothing companies that offer a wide variety of very attractive, top-to-bottom clothing for all ages. And of course, the best defense is always – Seek Shade!

 

Back to Top

Calling all Medicare Vitiligo Patients!


VSIVSI regularly hears from patients from all over the United States who have been denied insurance coverage for their vitiligo treatment. VSI has been fighting this battle on a national level for several years. While we are definitely making progress, it’s been a slow road.

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.

Medicare has agreed to meet with us – but requires that we bring Medicare letters of denial for a vitiligo treatment.

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

Back to Top

 

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

  1. Many people shy away from sunless tanning products because of the reputation they had in the early days for producing a very unnatural orange color. Though some may still do so, many advances in recent years have not only reduced the orange, but have added multiple shades and colors.

    Regardless of which products you choose, for best results from any sunless tanner it’s important to understand how they work. The ingredient responsible for tanning, dihydroxyacetone (DHA), works by reacting with amino acids in the outermost, (dead cell) layer of the skin. Because everyone naturally sheds dead skin somewhere between every 5 and 10 days, to get the most out of your sunless tanner application, it’s important to apply the product at the beginning of that cycle, which is accomplished by beginning with exfoliating to remove the dead skin cells.

Is it Safe to Exfoliate with Vitiligo

We know from research that the melanocytes (pigment-making cells) of those with vitiligo are inherently fragile, making them more susceptible to cell death from chemicals or minor skin trauma. Many self-tanners mention/recommend chemical exfoliants with ingredients such as salicylic acid, alpha hydroxyl acids (AHA) such as glycolic acid, beta hydroxyl acids (BHA), or “Scrub-free Exfoliating Pads” containing those ingredients. Various physical-exfoliating products like brushes and pads are also available.

Chemical Exfoliants: Use at your own risk.

Dr. Nanette Silverberg, Chief of Pediatric Dermatology, Mount Sinai Health System says the above-mentioned chemical exfoliants should be ok to use in products with low concentrations. But it can be difficult to know or find the level of concentration listed on a product.

Beware of Photosensitivity:

As mentioned in the above article, research has shown that AHAs can increase your skin’s sensitivity to the sun, prompting the FDA to recommend product labeling indicating the possibility of sunburn when using these products. Take this into consideration if planning to be in the sun or if using phototherapy.

Alternative Exfoliating Options:

Products such as exfoliating loofahs, gloves, or mitts should be safe to use as long as they are not too abrasive. Dr. Silverberg reminds us that “extensive scrubbing may Koebnerize (trigger) vitiligo and is NOT advised.”

Which Tanner Works Best?

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. 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.

DHA products are no longer “one-color-fits-all.” The DHA concentration of commercial products can range from 2.5 to 10% or higher, but most fall within the 3-5% range. The higher the percentage of DHA, the darker the color it will produce. Some of the labels make it difficult to know exactly how light or dark the product will actually look on your skin, but terms such as “fair” or “light to medium” generally produce a lighter color than those marked as “deep” or “dark.”

Self-Tanner and Instant Tan Terms

Bronzer:
Bronzers are typically liquid or powder cosmetic products that produce instant, but temporary, color that can be washed off at the end of the day. These are sometimes combined with DHA to produce both instant color and color that develops over several hours. The nice thing about the combination products is that you can see as you apply, which can help prevent streaks and over-application.

Gradual tanning: You may see this on combination products that include instant tint/color. However, anytime the label says “gradual,” the product contains some level of DHA and will produce color that develops over time.

Instant Tanner:
These products are made in a variety of formulas, such as lotion, mousse, and spray. If they provide “instant” color, then the product can be washed off at the end of the day. However, many times, as with bronzers, these formulas are combined with DHA.

Shimmer:
Labels that use words like “shimmer” or “iridescent” generally mean they leave a glittery appearance on the skin. Depending on your situation, this may be OK. A shimmering appearance may just look a little less natural.

Tinted:
Like cosmetic foundations, tinted products add a bit of color and many times are combined with moisturizers. These also wash off at the end of the day.

Application Strategies and Techniques

Keep in mind that most sunless tanning products are not marketed as corrective products for skin conditions, so the instructions may not be particularly helpful in that regard. Hopefully, this article will provide some application “tips and tricks” that with a little practice can be used to more successfully cover vitiligo.

Patch Test: If you are using a product for the first time, it might be a good idea to use it on a small, sensitive area, such as your stomach, then wait 24 hours to be sure you are not allergic to any of the ingredients.

Product Selection Factors

First rule-of-thumb: Always select colors based on your natural skin tone.

You can use additional coats to build (increase) your color as needed while keeping a natural look.

Blending/ Camouflage: The greatest misconception is that you apply the product only to the depigmented area and that it will magically match and blend in with your natural skin color. Now that would be magic!

Many products receive poor reviews because they don’t provide adequate application information. The ultimate goal is to blend the contrast between the pigmented and depigmented areas, which, in the case of vitiligo, is a bit more complicated than simply applying.

Even with professional products that have been carefully color matched to your natural color, you still have to work to blend the product by feathering the edges.

Size of Area and Location.

Large Area:
If the depigmented area is greater than a few inches, a spray is probably the easiest to apply. There are also gels and lotions that can cover larger areas, as long as you can reach, and more importantly, see, to apply evenly.

Smaller Area:
If the depigmented area is smaller, and particularly if it is in a very obvious location (like the face or hands), you may benefit from a product capable of a more precise application, such as Chromelin Complexion Blender.

This is a very concentrated liquid DHA product, and one of very few specifically developed for skin conditions like vitiligo. It is best used for very small areas (less than one-half inch) that can later be camouflaged/blended into the surrounding skin with an overcoat of another product such as a spray or gel.

This is typically applied directly to the affected area with a small applicator. Keep in mind that this is a very concentrated formula which can produce alarming results if not applied very carefully! To further complicate matters, the liquid is clear, and takes several hours (most of the day) to fully develop.

Liquid DHA Application Tips:

From personal experience, I can tell you that the flocked tip applicator works best for the concentrated types of liquids. They are very inexpensive, and can be purchased online or in the make-up section of most stores. You can use the same one for many months before discarding.

You’ll want to remove as much of the liquid from the applicator before applying to the skin. Even then, I would never just paint it on. After dipping the applicator into the liquid, pull it up/out rubbing it against the inside of the bottle, over and over until you have removed any surplus liquid, then carefully dab the area you want to color.

START SLOWLY!

You can always add more afterwards. Once the color develops, you are stuck with it for a l-o-n-g time!

After a few minutes, when the product has dried, you can then use a spray (or gel) to cover the entire area (hand, face, etc.) to help blend the contrast between the two areas. This way, the two products can develop at the same time, hopefully providing a somewhat blended appearance on day 2.

BE PATIENT!

Do not be tempted to add an additional coat of either product before the color has had time to fully develop. The higher the concentration, the darker the color, and the longer it takes to develop. Until you have experience with a new product, it is best to wait overnight before reapplying.

Spray Application Tips:

Whether you are using the spray alone, or blending over
another product, there are a few tips to keep in mind.

1. Safety Measures.

The FDA allows DHA to be "externally applied" for skin coloring; however, there are restrictions on its use. DHA should not be inhaled, ingested, or exposed to areas covered by mucous membranes including the lips, nose, and areas in and around the eye (from the top of the cheek to above the eyebrow) because the risks, if any, are unknown. You can purchase disposable nose filters online or at drug stores to protect you from inhaling the fumes.

Be aware that DHA products do not provide sun protection.

2. Do not hold the can too close.

This will most assuredly result in streaks of uneven color. Hold the can at least a foot away.

3. Keep the can moving at all times.

If you stop moving, you will have a heavier, uneven application.

4. Spray in a circular motion.

This will help prevent streaks.

5. Do not over-apply.

Begin with a fine mist. If you over-spray, it will likely drip or run, and the next day you will look like a zebra! If you want/need heavier coverage in some areas, you can re-apply another coat the next day.

6. Unintended Consequences:

Always keep a damp cloth or paper towel ready to wipe off over-spray. For instance, when spraying hands, be careful with fingernails (they will turn yellow), and areas like the palms, knuckles (which tend to soak up more color), and between the fingers. It’s always a good idea to wipe your fingernails after spraying hands – just in case.

When spraying legs, be careful about spray that might inadvertently (unevenly) land on your feet. When/if you spray the top of your feet you’ll need to use your damp cloth to be sure the tan line is even around the outer edges of the sole, and always take care not to go too low on the back of the heels, because that skin tends to be a little thicker/rougher and may absorb more and turn darker. And you really don’t want to get spray on the floor and walk through it!

7. Beware of Applying Pressure!

Potential hazards when using gels or sprays on feet, then wearing shoes:

1. The shoe may rub leaving very uneven color.

2. Or - the opposite: Areas where the shoe applied pressure may become very, very dark, sort of like the shoe pressed the color in. This can occur even waiting 2 or 3 hours after application to wear shoes, and can take up to a week to slough off!

Gel Application Tips:

The first thing to remember when applying gel products anywhere except the hands: Always wear gloves!

If applying to multiple areas, always use gloves, and always apply to the hands last. If you begin with the hands and then put on gloves, the gloves can cause sweating; resulting in uneven color.

Gel products may apply more evenly than sprays to areas like legs, where you can rub all sides evenly.

Gel products can take longer than sprays to dry. Allow at least 15 – 30 minutes to dry.

How Long Will the Tan Last?

Depending on the circumstances, sunless tanner usually lasts somewhere between 3 – 10 days. Maintaining optimal color is definitely an ongoing process. Though quality products may last a bit longer, keep in mind that quality and expense are not necessarily the same thing. Read product reviews.

Keep in mind that DHA looks different on freshly exfoliated, moisturized skin than it does on dry, dead skin. Even if it looks great on day one or two, it will eventually begin to turn orange as the skin begins to dry and slough off. Moisturizing daily can help extend the color. However, just as with a natural tan, factors such as heavy sweating, swimming, oily skin, and in the case of vitiligo, treatments such as topical ointments, can all impact the life of your sunless tan.

 

 

Medical News Updates

Highlights of recently-published medical
articles on vitiligo and its treatments


Does Vitiligo Offer Protection From Internal Cancers?

For over 10 years, research has shown a decreased risk of developing skin cancer for those with vitiligo. However, until recently, little research had been conducted regarding the risk of other types of cancer, specifically, internal cancers, for those with vitiligo. Two recent studies were conducted to further explore these risks.

Using data from the Korean National Health Insurance claims database from January 2007 to December 2016, Korean researchers conducted a population-based retrospective cohort study comparing results from 101,078 patients with vitiligo to 202,156 controls without.

After adjustments for age, sex, and comorbidities, when compared to the controls, the researchers found those with vitiligo to have a higher incidence rate of thyroid malignancies, as well as bone and prostate cancers.

However, vitiligo was associated with a decreased risk of overall internal malignancies, including in the stomach, liver, pancreas, gallbladder and biliary tract, cervix, uterus, testis, kidney, bladder, brain and spinal cord, colon, rectum, ovary, and lungs.

In a subgroup analysis according to sex, they also noted the risk to be more reduced in men with vitiligo than women.

In May 2020, a group of researchers in China published a study on this same topic. They used the Mendelian randomization approach, which compared 37 of the most common type of vitiligo genetic variations with corresponding genetic cancer data.

They estimated cause and effect between vitiligo and different types of cancer by comparing data from 246,706 vitiligo cases with 1,021,154 (non-vitiligo) controls.

Similar to the Korean study, they found vitiligo patients to be at lower risk of developing lung, breast, ovarian, kidney, liver, and melanoma and non-melanoma skin cancers.

These researchers suggested that the vitiligo-associated autoimmune process might actually be associated with cancer suppression.


New Treatment Rapidly and Completely Restores
Pigment to 4-Year-old Child with Segmental Vitiligo.

Segmental Vitiligo (SV) most often begins in children aged 12 years and under and is not typically associated with autoimmunity. In contrast with non-segmental vitiligo (NSV), SV usually affects a confined area on one side of the body, such as one side of the mouth or neck, and spreads fairly quickly at onset, then slows and remains stable after a year or so.

For many years it was thought that SV didn’t respond to the more conventional treatments offered to those with NSV. However, years of research, providing a better understanding of the nature of the disease, has disproven this notion.

Unlike NSV, which generally begins with a few small spots and spreads slowly, the rapid spreading of SV at the onset quickly involves the follicular melanocyte reservoir (where the pigment-making cells are generated). If not treated early, the reservoir can become depleted and unable to generate new melanocytes, which helps explain the poor outcome from conventional therapies.

Consequently, we now know that aggressive, combination therapies with treatments such as topicals, phototherapy, and oral steroids, offered very early after onset, can be quite successful. Multiple research studies have reported patients regaining from 50% up to complete repigmentation, with the best outcomes among those treating within 5 to 12 months of onset.

A recent report from two physician researchers in Connecticut have further confirmed this theory. A four-year-old boy who had developed segmental vitiligo on his chin within the previous six months had been using alclometasone 0.05% cream (a topical steroid) twice a day for 6 weeks, with no improvement.

Because the boy would be beginning elementary school in a few months, the parents were hoping for more visible improvement and were fortunate to obtain a referral. Under the guidance of the researchers, he discontinued using the steroid cream and instead began using tofacitinib 2% cream (a JAK inhibitor) twice daily. Also prescribed home phototherapy, he began using a hand-held narrowband ultraviolet (UV) B device three times a week.

Janus Kinase (JAK) Inhibitors

JAK Inhibitors have been the subject of intense interest and research in recent years. They work by inhibiting the signaling pathways that cause or trigger certain diseases. So, rather than the treatments that suppress the entire immune system, JAK inhibitors are able to suppress, or turn off, the specific pathway causing the body to target, in the case of vitiligo, the melanocytes, which are the pigment-making cells.

Within the first month, the depigmented area began freckling. After 3 months, the area had filled in all except three tiny spots, and by 6 months, the area had completely repigmented. The boy continued the treatment for another month. At that point, the physicians recommended tapering off of the treatment. However, the parents instead opted to discontinue altogether.

The area remained stable for 6 months, then began to lose pigment in a couple of very small spots, at which time he once again began the therapy.

The researchers found the rapid and nearly complete reversal of vitiligo to be dramatic by comparison to the usual therapies offered. In addition to the treatment starting quite early after disease onset, they attributed the success to the synergistic response from the use of the JAK inhibitor cream combined with the NB-UVB phototherapy. They also noted the lack of side effects, potentially making it a safe option for treatment.

The researchers noted that to their knowledge, this was the first case of the successful use of a JAK inhibitor combined with phototherapy for the treatment of segmental vitiligo, and found promise in the treatment, especially in the pediatric population.

 

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Research & Clinical Trials


Topical Jak Inhibitor Study
Tampa, Florida

Phase 3 Clinical Trial Program Evaluating
Ruxolitinib Cream in Patients with Vitiligo

Study Location:
Olympian Clinical Research
4700 N Habana Ave. Suite 303
Tampa, FL 33614

Research shows that when the JAK signaling pathway becomes over-active, it drives the inflammation associated with triggering the onset of, and subsequent progression of vitiligo. The goal of the ruxolitinib, a topical, nonsteroidal, anti-inflammatory, Jak inhibitor, is to reduce or block this process.

Participants will be randomized into one of two groups for a 24 week, double blind period.
Group 1 will apply 1.5% ruxolitinib cream twice daily.
Group 2 will apply a topical control cream twice daily.

All patients who successfully complete the 24 week test period, including those that received topical control will be offered the 1.5% ruxolitinib treatment (twice a day) for an additional 28 weeks.

Key Inclusion Criteria:

  • Clinical diagnosis of non-segmental vitiligo
  • At least 0.5% facial depigmentation.
  • At least 3% depigmentation on the body
  • May not exceed 10% total body surface area depigmentation
  • Must discontinue all vitiligo treatments from screening through the final safety follow-up visit.
  • Over-the-counter preparations deemed acceptable by the investigator and camouflage makeups are permitted.
  • Must be willing to take appropriate contraceptive measures to avoid pregnancy or fathering a child for the duration of study participation.
  • Agest 12-40

Key Exclusion Criteria:

  • No pigmented hair within any of the vitiligo areas on the face.
  • All forms of vitiligo other than non-segmental.
  • May never have used any depigmentation treatments.

To participate, or for more information: Call: (813) 849-5566 or Toll Free 1-844-347-8839 Or email:
Moroni Berrios: [email protected]
Kelley Yokum, MD: [email protected]
Lora Pea, RN: [email protected]


Topical Jak Inhibitor Study
Brooklyn New York

Phase 3 Clinical Trial Program Evaluating
Ruxolitinib Cream in Patients with Vitiligo

Study Location:
SUNY Downstate Health Science University
450 Clarkson Avenue
Brooklyn, NY 11203

Research shows that when the JAK signaling pathway becomes over-active, it drives the inflammation associated with triggering the onset of, and subsequent progression of vitiligo. The goal of the ruxolitinib, a topical, nonsteroidal, anti-inflammatory, Jak inhibitor, is to reduce or block this process.

Participants will be randomized into one of two groups for a 24 week, double blind period.
Group 1 will apply 1.5% ruxolitinib cream twice daily.
Group 2 will apply a topical control cream twice daily.

All patients who successfully complete the 24 week test period, including those that received topical control will be offered the 1.5% ruxolitinib treatment (twice a day) for an additional 28 weeks.

Key Inclusion Criteria:

  • Clinical diagnosis of non-segmental vitiligo.
  • At least 0.5% facial depigmentation.
  • At least 3% depigmentation on the body.
  • May not exceed 10% total body surface area depigmentation.
  • Must discontinue all vitiligo treatments from screening through the final safety follow-up visit.
  • Over-the-counter preparations deemed acceptable by the investigator and camouflage makeups are permitted.
  • Must be willing to take appropriate contraceptive measures to avoid pregnancy or fathering a child for the duration of study participation.
  • Ages 12-40

Key Exclusion Criteria:

  • No pigmented hair within any of the vitiligo areas on the face.
  • All forms of vitiligo other than non-segmental.
  • May never have used any depigmentation treatments.

To participate, or for more information,
Contact: Omobola Onikoyi, DO, MSc
718-270-2991 or email
[email protected]


NEW Online Depigmentation Survey

Have you Ever Considered Depigmentation Therapy?

VSI is assisting Simi Cadmus, MD, Pooja Reddy, MD, and Ammar Ahmed, MD, from Dell Medical School, at the University of Texas at Austin, who are seeking feedback from those with any type of vitiligo who have considered depigmentation, but have never undergone the therapy.

We need you to help physicians better understand
the first-hand insight into the patient perspective!

This group will represent a comparison group to those
who may have signed up previously who were
undergoing or had completed depigmentation therapy.

Participation involves:
Completing a brief online survey

Qualifications:

  • Must have considered, but not undergone depigmentation therapy
  • May have completed any type of vitiligo treatment except depigmentation

If you qualify and would be willing to complete a brief survey, click here.


Research Study in New York City

Recruiting Individuals
With & Without Vitiligo

Researchers in New York are seeking volunteers who have vitiligo, as well as those who do not have vitiligo. If you have vitiligo and would like to participate, bring a friend or family member who does not have vitiligo to participate as well!

Study Requirements:

Volunteers must reside in the NYC area
Volunteers must come to two (2) study visits at the clinic.

This is not a treatment study.

Researchers will be comparing pigment cells from those with vitiligo to those without vitiligo, to identify differences that may contribute to the progression of vitiligo, which may help to develop improved vitiligo treatments.

Study visits will take place at:

The Dermatology Clinical Studies Unit
NYULMC Ambulatory Care Center
240 East 38th Street, 11th Floor
New York, NY 10016

For more information, please contact:
Susan Cataldo, Research Coordinator:
212-263-5244 or email:
[email protected]

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