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Message From the Executive Director
Dear Members and Friends of VSI,
With knowledge comes power. Nowhere is this more evident than when we are confronted with a chronic disease like vitiligo. When diagnosed, many are met with uncertainty about what to do and how to respond. Knowledge can change this. Empowering your ability to make informed decisions and restoring your confidence in the future comes with the knowledge VSI strives to make available.
Over 100,000 people contacted Vitiligo Support International (VSI) last year seeking information on treatments, physicians, and support groups. This outreach is powerful evidence of how important information is to our community.
We want to provide quality information to as many as possible, but the reality is our outreach and ability to serve will continue to be measured by our funding. We are currently at or near our capacity in that regard, and without an increase in contributions we will be forced to make additional cuts to current programs in order to continue or strengthen others.
I ask you to carefully and honestly consider all that VSI has meant to you. If you have been helped by our information, I hope you will consider making a gift today to ensure that these and other services will continue. If you are not yet a Supporting Member, I invite you to Join Today, or consider making a Donation of any amount to sustain our programs and outreach.
We cannot operate without your help.
We send our best wishes to you for the New Year.
NYC Conference Review
On November 8, 2009, over 125 individuals and families whose lives have been affected by vitiligo came together in New York City to learn the latest on vitiligo and its treatments. VSI sponsored a regional meeting at St. Luke's-Roosevelt and Beth Israel Medical Center for the public to connect them to needed information and resources. Dr. Nanette Silverberg, Director of Pediatric and Adolescent Dermatology at St. Luke's, and member of VSI's medical advisory board, hosted the event.
Dr. Silverberg provided important tips and guidance for people with vitiligo. She urged the audience to keep these points in mind when assessing and/or undergoing treatment:
Dr. Andrew Alexis, Director of the Skin of Color Center at St. Luke's, provided an overview of vitiligo and Dr. Carmen Grau, Director of Psychocutaneous Medicine at St. Luke's presented information on the interplay between vitiligo and the psyche.
The meeting concluded with small group sessions on medical therapy, psychological health and sponsor presentations.
For a detailed report we recommend you log on to the VSI website and visit the "Conferences" Forum.
Vitiligo and Skin Cancer: Are you at risk?
An often-expressed concern of both vitiligo patients and dermatologists is whether having vitiligo increases one's risk for non-melanoma and/or melanoma skin cancer and if ultraviolet light therapy is a safe treatment. Though there are limited, but growing data, on this subject, key observations have been made which can help both the individual with vitiligo and dermatologist to better assess this risk. To effectively address the question, the information has been separated into these categories.
Melanin is the substance that gives the skin its color, with darker skin having higher melanin levels. Melanin acts as a sunscreen and protects the skin from ultraviolet light which helps prevent sunburn damage that could result in DNA changes and, subsequently, melanoma. The assumption by many has been that that because the depigmented skin affected by vitiligo has no melanin, that the patient would be more susceptible to some types of skin cancer.
Because there are no melanocytes in depigmented skin, it would be biologically impossible to develop in depigmented skin a melanoma the most serious type of skin cancer. The other forms, the so called basal epithelioma, could develop but are easily treated and are not life threatening.
Unfortunately there are no great statistical studies on cancer in vitiligo. However most research and/or observations indicate that while non melanoma skin cancers do occur in vitiligo patients, they are very rare and melanomas in the normal skin occur at most, in no greater incidence than within the normal population.
An interesting observation on this subject was reported in the book Vitiligo: A Monograph on the Basic and Clinical Science, by Seung-Kyung Hann and James J. Nordlund. Dr. Nordlund observed that in East African countries near the equator, where few work indoors and sunscreen is unavailable, that people with vitiligo not only do not appear to get skin cancer, they exhibit little sun damage to their skin. Other studies also agree that vitiligo patients generally do not demonstrate sun-induced skin damage, despite the lack of protective melanin in the skin.
Ultraviolet light, both natural sunlight and artificial light in PUVA, Excimer laser and narrowband UVB, is an important therapeutic tool for vitiligo. To date, most studies agree that light used in accordance with a supervised treatment plan is a safe, effective method for treating vitiligo. More long term studies will be needed to further assess any skin cancer risk from these treatments.
VSI would like to thank Dr. James J. Nordlund, Professor of Dermatology, Group Health Associates, Cincinnati, OH and Wright State School of Medicine, for his significant contributions to, and medical review of this article.
Is Total Depigmentation an Option?
Many people with vitiligo become frustrated from years of treatments with unsuccessful long-term results. While pigment may be gained, pigment in other areas may be lost. Furthermore, there is the expense and inconvenience of the medical visits and products, and many patients will never regain all of the lost pigment. For those who have extensive vitiligo and/or considerable psychological distress from their vitiligo, a course of action could be to totally eliminate the "normal" pigment remaining from the entire body; this process is depigmentation.
While some people totally depigment through the natural progression of their vitiligo, others make the choice to depigment. If a patient would like to consider this option, their doctor may request they begin with a psychological screening to determine that this decision is one they fully understand and are emotionally prepared for.
If their doctor determines they are a candidate for this treatment, they begin the fairly simple process. The doctor prescribes monobenzyl ether of hydroquinone, (MBEH) a compounded cream which is designed only for those with extensive vitiligo, in a strength of 10%, 20% (most often) or 30% or 40%. This cream has been around at least 30 years, and was formerly manufactured with the trade name of "Benoquin", but is now most commonly known by its generic name "Monobenzone."
The cream is rubbed into the pigmented areas of the body, starting with such areas as the arms and legs, once or twice daily and works to kill melanocytes systemically. The patient continues to do this, perhaps increasing the strength of the cream's active ingredients and/or the coverage area, over a period of a year or more, until the normally pigmented skin has faded to match the vitiligo spots, creating an overall pale appearance. The paleness is not a stark white, as many fear, but rather a slightly pink tone.
Lorraine O'Grady, depigmented VSI Board member and moderator of the "Depigmentation" Forum.
Side-effects are minimal, such as a possible rash reaction to the cream itself, which is usually overcome with patience. Initial usage on limited areas is advised to be sure to test a tolerance to the medication. Sun protection is very important to the depigmented patient. Doctors advise that sunblock be worn during any sun exposure and to avoid the most intense sun times of 10:00 a.m. to 2:00 p.m. if possible, as well as wearing a large brimmed hat. These precautions are necessary not only to protect the now-depigmented skin from burning, but also because sun exposure can stimulate new pigmentation, which a depigmented person wants to avoid.
Further treatment is generally not required unless unprotected sun exposure results in new spots of pigment. Those can be dealt with by application of the same prescription cream, but removal of skin color that recurs after depigmentation may be more difficult than that of the native skin tone.
For more information and to read firsthand accounts of those who have depigmented or are depigmenting, please log on to the VSI website and select "Community" then "All Message Boards" then scroll down to "Treatment Topics" and select the Depigmentation Forum.
VSI would like to thank Nanette Silverberg, M.D., Attending physician, department of dermatology, St. Luke's-Roosevelt and Beth Israel, specializing in pediatric and adolescent dermatology, and vitiligo, for her medical review of, and Dr Silverberg and VSI Board Member Lorraine O'Grady for their contributions to, the above article.
What's on Your Mind?
In this Column We Answer Questions From our Members
Frequently patients report something they've experienced or consumed to be the cause of a rapid pigment loss. One patient contacted VSI after our Fall Newsletter saying: "The last time I got a flu shot, I had some small vitiligo spots under my arms. The next morning after getting the vaccine, both underarms were completely depigmented. So I do believe vaccines can cause a vitiligo reaction"
It is extremely unlikely that skin pigment would disappear overnight. First of all it would take a day or two for the melanocyte to die off depending on the strength of the attack. Subsequently it would take another two to three weeks for the pigment that had been transferred to the keratinocytes prior to the melanocytes death to be desquamated (i.e., reach the surface of the epidermis (skin) and be sloughed off. So after an assault that damages the basal melanocyte, several weeks must pass for "complete depigmentation" to be visibly apparent. (Source: Ray Boissy Ph.D., Professor of Dermatology & Cell Biology and Director of Basic Science Research at the University of Cincinnati College of Medicine (UCCOM)
Yes, the small phenolic/catecolic derivatives in hair dye can easily penetrate the epidermis and travel down the hair follicle to the bulge region were melanocyte stem cells reside eventually causing pigment loss. (Source: Ray Boissy Ph.D.)
The initial affect of these compounds would be local and induce Vitiligo in the interfollicular epidermis of the scalp and beard areas and possibly induce hair graying after prolonged use. And yes, ultimately, this process could result in stimulating and/or recruiting a genetically regulated heightened autoimmune response causing systemic pigment loss in other areas of the body for those patients with generalized vitiligo. (Source: Ray Boissy Ph.D.)
Camp Discovery 2010
In 1993, the American Academy of Dermatology (Academy) started Camp Discovery with a single camp location in Minnesota serving about 50 kids. Little did we know that Camp would be so successful! More than 3,000 kids have benefited over the past 16 years.
This year the Academy is proud to offer four camping sessions for young people with chronic skin conditions who are between the ages of 8 and 16. Under the expert care of dermatologists and nurses, Camp Discovery gives campers the opportunity to spend a week with other young people with skin conditions, while participating in everything from swimming and fishing to horseback riding to lots of camp games and just plain fun!
There is no fee to attend this very special camp. Full scholarships, including transportation, are provided by the Academy through generous donations from its members, outside organizations and individuals. All campers must be referred by their dermatologist.
For more information about attending or volunteering please visit their Web site at campdiscovery.org or contact Janine Mueller at 847/240-1737 or [email protected]
First Vitiligo World Congress to be held in Milan Italy
The 2010 WORLD VITILIGO CONGRESS
September 23- 24 at San Raffaele Scientific Institute
Why a Congress dedicated solely to vitiligo?
In spite of not being a rare disease, being classified as a disease by the WHO (World Health Organization) and being one of the most psychologically devastating chronic skin diseases, with a major impact on both patients and their families, vitiligo is still today underrated and underestimated.
There are still many dermatologists who minimize the impact of the disease and trivialize the condition or deceive patients' expectations, leaving them vulnerable to therapies not proven effective often found within the depths of Internet.
In view of the fact that these last ten years have witnessed a growing interest for research and an improved understanding of the mechanisms regulating the disease, its genetic susceptibility and the role played by autoimmunity this highly intense conference, the Faculty of which is made up by the most eminent experts in the field, sets the goal of becoming an ideal occasion for an innovative and in-depth analysis of vitiligo.
September 25 will be dedicated to patients: "Vitiligo, where are we now?
This day will provide interaction between patients, clinicians and scientists. The goal of this event is to allow patients to play an active role in the field of research and to provide them with more information on existing therapies.
Patients will have the chance to work in partnership with investigators, clinicians and healthcare professionals, interacting with members of the international vitiligo scientific community.
Participation is free of charge.
Earn funding for VSI when you Shop!
Please keep VSI in mind when you do any of your online shopping
Amazon.com has all kinds of items in addition to books. As long as shopping is done through this link Amazon.com or from the Amazon box on our Community Home Page they return a portion of the sale to VSI. The more items members buy, the higher the percentage!
Our Vitiligo Library and Store is also powered by Amazon!
Our other program is iGive.com The iGive shopping mall has over 700 stores where you can shop and VSI gets a percentage friends and family know about iGive, so they can support VSI too. You do have to register for iGive. Once you've registered, you can either shop directly through their mall by downloading their toolbar which makes it even easier
We also hope you will consider participating in a Charity Walk for VSI. All you do is send sponsor forms to your friends and pick a date and time convenient for you, and walk!
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