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VSI
 

In This Issue

Director's Message:

Support VSI

Starting a Local Support Group

Medicare Coverage for
Vitiligo Treatments

What's On Your Mind?

  • Can Depigmentation
    Cause Vitamin D Deficiency?

Medical News Updates

  • Upper Extremity Moles
    Found to be Risk Factor for Vitiligo

Research & Clinical Trials

Bibliography and Sources

Shop Online: Earn Funding for
VSI with Amazon and eBay


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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Contact Us

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Vitiligo Support International
P.O. Box 3565
Lynchburg Va 24503

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Message From the Executive Director

VSIDear VSI Members, Friends, and Donors,

VSI regularly hears from vitiligo patients from all over the world, who are struggling with a disease known to rob individuals not only of their pigment, but their self-worth, their identity, and their quality of life. Most have never heard of vitiligo, and many have been told, or read, that there are no treatments, or the treatments are dangerous and don’t work.

Of all the difficulties faced after being diagnosed with vitiligo, obtaining treatment shouldn’t be on the list. Vitiligo patients face well documented barriers to treatment such as insurance denials, or treatment expense, however, one of the most frustrating should be the most preventable......

Misinformation!

Yes! There are treatments that DO work. They are NOT dangerous. Those with vitiligo do NOT have an increased risk of developing skin cancer! Treatments may be expensive, but VSI is working at the national level to fight insurance discrimination of vitiligo treatments, and we’re winning the battle!

Vitiligo is no more cosmetic than other inflammatory skin diseases with severe psychological implications such as acne, psoriasis, and atopic dermatitis, all of which have treatments covered by insurance.

Please join VSI’s battle to eradicate misinformation and discrimination.

Together We Can Make a Difference!

Please Click Here to Support VSI's Work

Sincerely,
VSI
Jackie Gardner
Executive Director

 

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Starting a Local Support Group


There is nothing like the opportunity of meeting other people living with vitiligo and the chance to share support and experiences in person. Even those in a very supportive family or environment describe feelings of sadness, confusion, and isolation. They just want to meet and talk with others who’ve been where they are and understand.

Because there are so few established vitiligo support groups, VSI frequently receives requests for information on how to start a group. To further complicate matters, many people who contact VSI have been unable to find a local dermatologist who is particularly supportive of vitiligo treatments, which can be limiting with regard to support group assistance. However, with or without medical support, you can still have a successful support group!

While VSI does not currently have the capacity to oversee local support groups, we are happy to share the following information and guidelines for those who are interested in starting a local group.

Click Here to Read Complete Article

 

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. Can Depigmentation Cause Vitamin D Deficiency?

After reading several of VSI’s newsletter articles about vitamin D and vitiligo, I asked my doctor to include the 25-hydroxy vitamin D test in my labs this year. It turns out my levels were really low, so my doctor recommended that I start taking a vitamin D supplement.

I started the depigmentation process about 6 months ago and wondered if this could have anything to do with it?

  1. Many things can affect vitamin D levels. If you do not know what your level was before you began the depigmentation process, it would be difficult to know any effect it might have had.

    From time to time we receive questions regarding the ability of a person who is completely depigmented to properly synthesize vitamin D. The answer to that question is yes. Vitiligo only damages the melanocytes, and vitamin D synthesis occurs in the keratinocytes.

Another consideration for those who are either depigmented, or in the process of depigmenting, would be how conscientious they are about protecting their skin from sunlight.

VSIAccording to the American Academy of Dermatology, very few people apply the recommended amount of sunscreen, which is 1 ounce (enough to fill a shot glass), or, apply as often as is recommended, which is every two hours, or after swimming or sweating.

So, if you are relying solely on sunscreen for sun protection, and you do not closely follow the recommended application amount or frequency guidelines, then it is not likely that sunscreen alone would cause vitamin D deficiency.

However, your vitamin D levels could be suppressed if: you routinely apply sunscreen as recommended, wear sun protective clothing, and avoid direct sunlight during peak times.

Other Risk Factors for Vitamin D Deficiency Include:

Darker skin: Darker pigment acts as a natural sunscreen

Those over the age of 50: As the body ages, it loses some of its ability to synthesize vitamin D from sunlight

Breastfed infants that do not receive vitamin D supplementation

Those with a disease or condition contributing to malabsorption, such as: celiac disease, chronic liver disease, chronic pancreatitis, Crohn's disease, irritable bowel syndrome, lactose intolerance, gastrointestinal surgery, alcoholism, type 1 diabetes, autoimmune thyroid disease, autoimmune liver disease or rheumatoid arthritis

Those with autoimmune diseases, particularly autoimmune thyroiditis

Body Weight: Those with excess body fat have lower vitamin D levels, so those who are overweight or obese have a higher risk of vitamin D deficiency

Research has shown an increased risk of vitamin D deficiency in many conditions associated with vitiligo. Therefore, it would be wise for all vitiligo patients to include regular vitamin D testing.

 

Medical News Updates

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


 Upper Extremity Moles Found to be Risk Factor

The Journal of Investigative Dermatology recently published the results of a prospective cohort study to determine specific risk factors of developing vitiligo. The analysis from the Nurses’ Health Study used the data of 51,337 white women to determine the association between pigmentary traits, reactions to sun exposure, and the risk of vitiligo.

The 271 women with physician diagnosed vitiligo
were asked to report the following:

  1. Number of moles on their left arm, measuring at least 3 mm in diameter
  2. Their reaction to sunburn
  3. Their ability to tan during childhood

The following were found to be significant risk factors for developing vitiligo:

A higher tanning ability: developing an average or deep tan after prolonged sun exposure.
At least one blistering sunburn during childhood
At least one left arm mole larger than 3 mm

The Investigators Commented:

“The benefits of good sun protection can be expanded to include potential vitiligo prevention, which may be particularly applicable to adult patients with vitiligo who are concerned about their children developing the condition,”

 

 

Back to Top

Research & Clinical Trials


Online Vitiligo "Selfie" 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.

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: DCSU@nyumc.org





 

 

Earn Funding for VSI with Amazon and eBay


Online Shopping Can Benefit VSI!

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) 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.

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.

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.

 

Support VSI Through Ebay


 

Support VSI with 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

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