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This Newsletter Has Been Generously Sponsored By:
VSI
 

In This Issue

Director's Message:

  • Vitiligo Cures and Miracle Treatments: Who Can You Trust?

Tattooing and Micropigmentation
for Vitiligo?

Medicare Coverage for
Vitiligo Treatments

What's On Your Mind?

  • How Does a Person get Vitiligo?
    Is it Contagious?


  • If I Marry a Person With Vitiligo,
    Will Our Children Have Vitiligo?

Medical News Updates

  • Vitiligo and Nail Abnormalities

  • Genetic Research Update

Research & Clinical Trials

Bibliography & Sources

New! Support VSI With eBay

Earn Funding for VSI
When you Shop!

VSINow Visit VSI
on Facebook

VSIAnd Twitter

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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Message From the Executive Director

VSIDear Members and Friends of VSI,

If you’ve ever surfed the web, then you’ve likely seen the claims of vitiligo cures and miracle treatments. I know that plenty of our members have seen these stories, testimonials, and ads, because we regularly receive phone calls and emails seeking validation of such products or claims.

Twenty years ago, after seeing your doctor, if you wanted additional information about vitiligo, you had to go to the library or make an expensive long distance phone call to an organization like VSI. However, in today’s technological environment, if you have a question, you can find the answer in just a few short keystrokes, right?

Who Can You Trust?

The problem is that the internet is filled with biased, unsubstantiated, and conflicting information. Separating fact from fiction and staying on top of the latest information is not for the novice!

VSI is dedicated to providing valid, unbiased, and current information, which requires collaboration with a strong professional network of clinicians, researchers, healthcare providers, and public policy leaders, as well as attending ongoing educational sessions and meetings.

As a nonprofit organization, all of VSI’s efforts: publications, programs, services, professional meetings and memberships, our office (staffed 5 days a week), server space, website, IT programmers, newsletter software, and much more, is sustained by the generous support of our donors.

We’d like to take this opportunity to extend our most heartfelt gratitude
to each and every VSI Supporting Member and Donor.
Every Dollar Counts!

If each person reading this newsletter made an annual donation
of just $10.00, VSI could nearly double its 2017 income.

Will You Support VSI’s Campaign to Transform the Future of Vitiligo?

Please Click Here to View Support Options

Sincerely,
VSI
Jackie Gardner
Executive Director

VSI

This organization is a Silver-level GuideStar Exchange
participant, demonstrating its commitment to transparency.

Click Here to View Complete Newsletter

 

 

What About Tattooing and
Micropigmentation with Vitiligo?


Should Someone with Vitiligo Get a Tattoo?

The following article and photos have been reproduced
with permission from John E. Harris, MD, PhD.

“The answer is not straightforward, and requires some discussion about the purpose of the tattoo, the stability of vitiligo, and the expectations of the patient. Some people want to tattoo a vitiligo spot with their skin color, so that it covers the spot and their skin looks even. Others want to tattoo a picture or phrase over their spots to serve as a distraction, and others just want to get a tattoo on a part of the body that doesn’t have spots, but they heard that it might make their vitiligo worse. I will address all of these options here, as well as their pros and cons.

First of all, for a number of reasons it is usually a bad idea to try to tattoo the color of your skin over a vitiligo spot to hide it. It is very difficult to match the color of your skin with tattoo ink, partly because the skin color changes with the seasons, sun exposure, and age. But also, the color of ink tattooed deep into the skin is altered significantly when light travels from the ink, through layers of the skin, to your eye (the Tyndall effect). So whatever color you select for the tattoo, it will look a lot different once it’s placed into the deep skin (the dermis) through a tattooing needle.

Another problem is that the vitiligo spot may get larger with time, and so even if the color match were perfect, the spot may grow, creating a ring of white skin around the tattoo, which won’t do much to help hide the vitiligo.

Alternatively, I have seen many patients with tattoos over their vitiligo spots that are interesting pictures or phrases that become a distraction from the white spots, and these often work well. For example, one patient had the phrase “You are beautiful” tattooed over her vitiligo.

This approach does not depend on matching the skin color or shape of the spots, so it can work well. However, any trauma or damage to the skin, including puncturing the skin with a tattoo needle, can worsen vitiligo at the site, or create a new vitiligo spot. This process is called koebnerization, which is common to see on the knees of children with vitiligo, for example, because they often fall, scrape their knees, and vitiligo appears.

Another patient I saw with this was an avid mountain biker, who frequently banged up his legs, and had many vitiligo spots up and down his shins. This may or may not happen if you have vitiligo and get a tattoo, but it is more likely to happen if your disease is actively spreading, such that you are getting new spots or your old ones are getting larger. It is a particular risk if you tend to get vitiligo spots where your skin is damaged, from a burn or a cut, for example.

So in summary, if you have vitiligo and you’re thinking about getting a tattoo, consider a few things first. It is rarely a good idea to try to tattoo a vitiligo spot the same color as your skin, because the color will not likely match exactly, the color of the skin changes, and the spot may get larger.

If your vitiligo is active (you’re getting new spots, old ones are getting larger, or spots appear when you damage your skin), a tattoo might make it worse, or cause a new spot.

But many people with vitiligo have chosen to get a tattoo with good results. It is not likely that the tattoo ink itself will fade with vitiligo, since vitiligo is not lightening of all color, but loss of the color-producing cells called melanocytes. So tattoo ink shouldn’t be affected by vitiligo. In the end, the decision is up to you, and if you decide it’s worth the risk to get the tattoo, have fun with it!”

What About Micropigmentation?

Micropigmentation uses equipment similar to devices used in specialized tattooing methods. However, the pigments used are metabolically inert and are different from tattooing ink.

Click here to learn more about the differences between micropigmentation and tattooing

Click here to follow Dr. Harris on his blog

 

 

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.

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

 

 

VSI

What's On Your Mind?


Q. How does a person get vitiligo? Is it contagious?VSI

  1. NO! Vitiligo is NOT contagious. You cannot "catch" vitiligo by eating, drinking, or otherwise associating with a person who has vitiligo.

    Vitiligo is a genetic disease caused by a combination of factors, beginning with inheritance of multiple genes associated with vitiligo and related autoimmune diseases. There are also significant, non-genetic (environmental) factors involved such as physical or emotional stress, illness, skin trauma, or exposure to certain chemicals that play a role in disease development.

Q. If I marry a person with vitiligo, will our children have vitiligo?VSI

  1. Research has shown that when one parent has vitiligo, their children will develop vitiligo only 5% to 7% of the time.

Even with identical twins who share all the same genes, both twins develop vitiligo only 23% of the time. Since the development of vitiligo is associated with both genetic and environmental factors (as discussed above), one twin can be exposed to a life-event causing great physical/emotional stress, or other factor, and subsequently develop vitiligo, while the other twin, who does not share the same environmental exposures and life-events, could develop vitiligo at a different time or not at all.

Medical News Updates

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


Nail Abnormalities in Patients with Vitiligo

Researchers from Istanbul, Turkey noted that nail abnormalities (NAb) have been documented in various other autoimmune diseases associated with vitiligo, and suggested that the same should be apparent in vitiligo patients. With prior research on the topic being limited to a single report, they conducted a two-year study to determine the frequency and type of nail abnormalities in vitiligo patients compared to non-vitiligo control.

Study Findings:

The researchers observed an increased incidence of NAb among those in the vitiligo group (78% exhibiting at least one nail abnormality) as compared to those in the control group (55%), but found no correlation between the presence of NAb and patient age or vitiligo duration.

The 3 Most Frequent NAb Observed in the Vitiligo Group:


Longitudinal ridging (42%)
Appears as a series of superficial, narrow,
longitudinal, parallel striations on the nail

 


Leukonychia (16%)
Appears as white spots

 

VSI

Absent lunula (13%)
Absence of the lunula (the crescent-shaped white area at the base of the nail)

Editor’s note:

An absent lunula on the little finger is considered normal. However, small or no moons on the other fingers can indicate an underactive thyroid gland, as well as deficiency of vitamin B12 or iodine which feeds the thyroid gland.

Because research has shown the risk to develop autoimmune thyroid disease to be 2.5 times higher among those with vitiligo than in the normal population, if you notice a nail abnormality, you should check with your doctor about thyroid testing.

 


Genetic Research Update From the
University of Colorado

As many of you know (and MANY of you have contributed samples to), Dr. Richard Spritz of the University of Colorado at Denver and his team from around the world have been researching the genetics of vitiligo for many years. His previous genome-wide association studies (GWAS 1 & GWAS 2) found 27 genetic loci (where a gene sits on one or more of the 23 chromosomes that make up human DNA) related to the development of vitiligo in patients of European ancestry as well as linkage to several other autoimmune diseases.

Recently, his team completed further research, including GWAS 3, in those of European ancestry, and combined the new results with those from the previous GWAS, examining a total of 4,680 vitiligo cases and 39,586 controls. This new research identified 23 new loci that are quite likely to be associated with vitiligo, and 7 more that are suggestive of being involved, thus doubling the number of known genes increasing the risk of developing vitiligo.

Most of the newly-identified loci are associated with regulating immune and cell processes, with some also associated with other autoimmune diseases and some with the regulation of melanocytes.

Dr. Spritz feels like they have a new understanding of how these genes work together to cause vitiligo and possibly related diseases such as autoimmune thyroid disease, pernicious anemia, Addison’s disease, rheumatoid arthritis, adult-onset type 1 diabetes, and lupus.

Because their research shows that many of these genetic variations are in areas that control how the genes function and regulate themselves, it may lead to specific areas to identify for vitiligo treatments as well as better understanding and treatments of these other diseases.

 

Back to Top

Research & Clinical Trials


New Online Vitiligo Study!

Vitiligo Selfie Study

Research Coordinator: Elizabeth Tkachenko

Online Study Conducted by:

University of Massachusetts Medical School
Department of Dermatology

The goal of this study is to observe how vitiligo changes, moves, or resolves over time using self-taken, “selfie” photographs.

If you choose to participate, you will send us one photo per week for 52 weeks (one year). By combining and tracking these photos, we will be able to determine how the lesions in vitiligo tend to change and progress over time.

The entire study will take place online, and you will receive weekly email reminders containing a direct link to the short survey and secure photo-upload feature.

We are looking for participants with darker skin tones who are currently not receiving any treatment for their vitiligo.

If you are interested in participating, please contact research staff and we can send more information, answer your questions, and determine if you are eligible to participate in the study. Contact: vitiligoselfiestudy@gmail.com





Vitiligo Research Study in New York City.

Volunteers Wanted

Have you been diagnosed with vitiligo?

Would you like to take part in a research study
to help those who have been diagnosed?

We are looking for both healthy volunteers and persons diagnosed with vitiligo to take part in a research study.

The biology of vitiligo is poorly understood and while there are many treatment options, many carry the risk of side effects or are only temporarily effective. We are performing a study to improve our understanding of the biology of vitiligo. Subjects will be asked to come to 2 study visits.  We will be collecting skin samples from both patients diagnosed with vitiligo as well as healthy adults for this study.

We will compare pigment cells from the two groups to identify differences that may contribute to progression of vitiligo. This information may allow us to develop improved treatments for vitiligo.

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:
212-263-5244
Dermpharm@nyumc.org

IRB approved 10/7/15





Needling Clinical Trial in New Jersey

Assessing the Efficacy of Needling
With or Without Corticosteroids in the Repigmentation of Vitiligo

Principal Investigator:
Babar Rao MD

VSI

Study Location:

Rutgers - Robert Wood Johnson Medical School
1 World’s Fair Dr, Somerset, NJ.

Needling is an office-based procedure that transposes healthy, pigmented skin cells to depigmented areas using a needle. This trial will investigate the use of needling to treat vitiligo. It will compare needling alone to needling with corticosteroid.

Eligibility Requirements:

  • Ages: 18 – 89 years
  • Patients with 3 or more localized patches of stable vitiligo
  • No prior treatment or had failed previous vitiligo treatments.

Exclusion Criteria:Those with the following will not be eligible:

  • Unstable vitiligo (no new or changing lesions in past 6 months)
  • Allergic to triamcinolone
  • Using systemic treatments
  • Pregnant
If you are interested in participating or would like more information:
Contact: Aida – 732-235-7765   or  Hamza Bhatti - bhattihd@rwjms.rutgers.edu


 

NEW! - Support VSI Through Ebay


 

New Way To Support VSI Through Ebay!

Do you sell items on eBay, or want to hold an online garage sale? If so, consider donating a percentage of your proceeds to VSI through eBay’s Giving Works program! It’s easy – when you list an item through a Giving Works listing, choose to send 10-100% of the final sale price to VSI. Your listing will have a special placement and designation. You’ll receive a proportional fee credit from eBay, and will also receive a tax donation receipt when the donation is deducted from your funds received. It’s a great opportunity to make some money for yourself and for VSI, so clean out those closets and garages and get selling! 

To Learn More About VSI's Giving Works: Click here

 

Earn Funding for VSI 3 Ways When You Shop!


Your Online Shopping Can Benefit VSI!

Tobi Cares Donation Program

Tobi is an online women's clothing design label that brings LA style from its design studio direct to its online clothing store at tobi.com.  Go to Tobi Cares and sign up for VSI to receive 1% of your purchase amount.

AMAZON SHOPPING

With thousands of items in addition to books, Amazon.com is a one stop-shopping center! Simply shop through the above link (bookmark it for easy reference), or from the Amazon box on our Community Home Page, and VSI will earn fees, based on a percentage of the sale. The more items purchased by members, the higher the percentage! Our Vitiligo Library and Store, containing books, articles and products for those with vitiligo, is also powered by Amazon.

iGIVE SHOPPING

iGive.com offers access to free shipping deals and exclusive coupons, on top of the great deals you'll find every day through its network of 1,000+ stores, including Pottery Barn, REI, Staples, Petco, Expedia, Best Buy, QVC and many more. Best of all, up to 26% of your purchase at each store is donated to VSI at no cost to you! Let friends and family know so they can support VSI, too. Click register for iGive to get started today, and download the iGive button to automatically benefit VSI whenever you go to an included store. You can also raise a penny per search through iGive’s search engine, isearchigive.com.

GOODSEARCH SHOPPING AND DINING!

GoodSearch and Goodshop, like iGive, offers coupons, discounts, and donations to VSI through its network of over 5,000 stores. Just click the link above to get the savings started and the donations flowing!

* Vitiligo Support International Inc. (VSI) is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.

 

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Reproduction or republication strictly prohibited without prior written permission


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