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.

For more information
on VSI's MSAC Click Here

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Message From the Executive Director

Dear Members and Friends of VSI,

I have never been more energized and hopeful for the future of all those affected by vitiligo! I have just returned from the American Academy of Dermatology annual meeting held in Miami. For the second year in a row, I've had the opportunity to spend time with an international group of individuals who have dedicated their lives to our cause.

This group is comprised of the very brightest minds in the field of vitiligo from all corners of the earth. These are the scientists conducting the most state of the art vitiligo research in the entire world, who come together each year to discuss and compare their thoughts, findings, and plans for the future. Also in this group are the most passionate and com passionate physicians, who care deeply not only about their own vitiligo patients, but are personally committed to a better future for us all.

The most inspiring aspect to me has been the voluntary and deliberate inclusion of patient representation in this group. For decades, vitiligo patients have reported their physical and emotional experiences to their doctors. By and large, these personal accounts have not only been dismissed, but, in many cases, mocked by the very people in whom they'd placed their trust.

We, as patients, have now been recognized as an integral stakeholder in this process. Does that mean the battle is over? Absolutely not! It means we have been given a seat at the table. What we do with that seat now rests on your shoulders.

Are you content with the current level of vitiligo research ? Are you content with current vitiligo treatment options? Are you content with the medical profession dismissing the emotional and psychological impact of vitiligo?

If not - then we ask for your support in this effort.

Sincerely,

Jackie Gardner
Executive Director

As the great Mahatma Gandhi once said:

"You must be the change you wish to see in the world.”

We rely on the support of a few,
but we need the support of many more.

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Photos below taken during 2013 Miami vitiligo meetings.

Top left : VSI Director Jackie Gardner addresses the group.
explaining the impact of vitiligo on the lives of those affected.

Top right : Dr. Iltefat Hamzavi of the Henry Ford Hospital in Detroit MI

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What Type of Vitiligo Do You Have?
What Are the Clues; Why Does it Matter?
Insights for Research and Treatment

If you have vitiligo, your first thought may have been why? You've heard that vitiligo is a genetic or hereditary disease, yet how is that possible when no one else in your family ever had vitiligo? You've heard that the most common type of vitiligo is an autoimmune disease, and that autoimmune diseases also tend to run in families. But no one else in your family has an autoimmune disease, or do they? You remember that Uncle Chester and two of his children had a lot of thyroid problems; you didn't realize until you asked that they all had Hashimoto's thyroiditis, which is not only an autoimmune disease, but is commonly found in the families of those with vitiligo.

Antibody- Y-shaped proteins used by the immune system to find and neutralize
foreign 'invaders' in the body such as bacteria, viruses and parasites.

Autoantibodies- Antibodies produced by the immune system when there is an autoimmune response – an inappropriate attack by the immune system against healthy tissue when this tissue is mistakenly identified as 'foreign,' rather than 'self.' These autoantibodies cause inflammation and damage, leading to autoimmune diseases.

Autoimmune Disease- The body's immune system normally works to "seek and destroy" invading microorganisms (such as viruses, bacteria, and parasites) by using antibodies. An autoimmune disease occurs when the immune system mistakenly identifies some part of the body as a foreign "invader" and begins producing antibodies against its own healthy tissue, causing damage.

Each person inherits different combinations of genes from their parents, but even identical twins, with identical DNA, both develop vitiligo only 23% of the time. This indicates that there are also significant, non-genetic (environmental) components. Maybe one twin experienced a great deal of emotional stress, such as the death of a very close friend, and developed vitiligo at age 20. The other twin could develop vitiligo later in life, or never.

Maybe you've read about depigmentation beginning at the site of skin trauma, like when a child loses pigment on their knees after falling and scraping them. But you do not recall ever losing pigment after a similar type of injury. Maybe you experienced extreme itching on some areas prior to pigment loss, but no one else with vitiligo that you've talked with experienced any kind of itching at all. Does that mean the itching you experienced in the very place that later lost pigment was coincidental?

Researchers are discovering that the variations in when and how vitiligo begins, such as the location, shape/pattern, speed at which it progresses, and the age of the person, are not only factors in determining the type or subtype of vitiligo, but may be the result of different biological pathways. These pathways may also vary in the way they respond to environmental or genetic factors, explaining why a treatment that works well for one person may not work as well, or at all, for another.

Science is changing our understanding of vitiligo from a single disease to a disease of subtypes, each differing in onset, severity, body parts involved, symptoms and secondary disease. These subtypes may also involve different biological pathways and perhaps different sets of genes. Researchers are hoping that clues, such as itching prior to depigmentation, will help identify these new subtypes and their pathways. Understanding these differences will be the clues to fully understanding vitiligo and the most effective ways to treat it.

3 Major Types of Vitiligo
Segmental (SV), Non-segmental (NSV), and Mixed Vitiligo (MV)

SV - starts and stays on one side of the body, rarely associated with autoimmune disease.

NSV – includes all types except SV, is an autoimmune disease, and often mirrors on both sides of the body

MV – overlap of both types in the infrequent cases where SV becomes NSV

Early-Onset (Childhood) Vitiligo: A Possible New Type

Early-onset, or childhood, vitiligo has been proposed by some researchers as a new fourth sub-type of vitiligo. Those with early-onset can have SV, NSV, or MV; however, they still have characteristics which distinguish them from later-onset vitiligo. Researchers believe that identifying these unique characteristics will be another big step toward cracking the code of vitiligo.

The recent work done by two French research teams, one headed by K. Ezzedine M.D., of the National Centre for Rare Skin Disorders in Bordeaux, and the other by Juliette Mazereeuw-Hautier M.D., PhD., Purpan Hospital in Toulouse, indicates that NSV and SV in childhood vitiligo not only manifest differently, but appear to have different trigger and risk factors. A team from Greece headed by Electra Nicolaidou M.D., Ph.D., published one of the few reviews comparing early-onset and later-onset vitiligo.

Dr. Ezzedine's team observed 213 children and adolescents between the ages of 4 1/2 and 17 for 4 years. Of the 213, 28% had SV, 67% had NSV, and 5% had MV. Dr. Juliette Mazereeuw-Hautier's team followed 114 children averaging 8 years of age for 2 years; 22% had SV and 78% had NSV. Dr. Nicolaidou's team followed two groups of patients - 126 with onset before age 12, and 107 with later-onset - for almost 5 years, but did not separate them by vitiligo type.

In this article, we have focused on the differences between early-onset and later-onset vitiligo identified in this recent research and their significance for future research and for the vitiligo patient.

Childhood onset vitiligo - also known as
early-onset vitiligo and pre-pubertal onset vitiligo
Vitiligo developing before the age of 12 years.

Later-onset vitiligo - also known as adult-onset vitiligo
Vitiligo that develops at age 12 or older.

Overview of Early-Onset/Childhood Vitiligo

Nearly 25% of patients develop vitiligo before the age of 12, and 50% before the age of 20. Early-onset vitiligo can appear in both boys and girls any time before the age of 12, even in infancy, although no one is born with vitiligo. Early-onset vitiligo can appear anywhere on the body, though it favors the head and neck (especially the eyelids).

Current studies are examining what triggers the disease to appear in childhood. Potential triggers include emotional stress and the Koebner phenomenon. The influence of these and other trigger factors, however, may depend on the genetic profile and family history of the child.

When the two independent French research teams recently compared children with segmental vitiligo to those with non-segmental vitiligo, those with SV had less frequency of the Koebner phenomenon, and less family history of autoimmune disease, including thyroid disease and vitiligo.

On the other hand, a child with a family history of vitiligo, autoimmune thyroid disease, and/or other autoimmune disease is more likely to have non-segmental vitiligo. These children also had a higher frequency of autoimmune markers such as the Koebner phenomenon, presence of halo nevi, and antithyroid antibodies. Thyroid abnormalities were seen almost exclusively in these children. Children with long duration of vitiligo and a positive family history of thyroid disease were found in the Greek study to be at greater risk of having thyroid disease. Ezzedine's team found that emotional stress and a family history of premature graying of hair preceded the onset of vitiligo more often in NSV patients than in those with SV.

Halo Nevi (HN)- A mole with a white ring or "halo” around it, generally found on the torso. These moles are entirely benign and are of only cosmetic significance. They are usually single, but may be multiple. The HN can disappear with complete repigmentation of skin, either on their own or with light or topical treatment. If the HN has a benign appearance, no treatment or removal is necessary.

Koebner phenomenon- Depigmentation occurring at the site of skin injury – scrapes, cuts, etc. – or chronic pressure or repeated friction, such as a shoe rubbing on the foot.

Thyroid autoantibodies (also known as anti-thyroid antibodies, thyroid peroxidase antibody, anti-thyroid peroxidase antibody, anti-TPO, and TPOAb)- The autoantibody that attacks the thyroid gland. It is significantly more common in vitiligo patients, especially in young women. The presence of thyroid peroxidase autoantibodies in the blood is a relatively sensitive and specific marker of autoimmune disorders, including Hashimoto's disease or Graves' disease, the most prevalent autoimmune thyroid diseases associated with vitiligo. While there is no guarantee that someone with TPOAb will develop thyroid disease, the risk does increase. Since vitiligo typically appears first, screening for these antibodies is recommended for vitiligo patients.

A new finding by the Ezzedine group was that 20% of those in their NSV group reported itching prior to depigmentation, a symptom that resolved once the skin was depigmented. About 9% of people in the SV group also reported experiencing the same symptom. This is a most interesting observation, as itching has not been identified as a symptom in previous epidemiological studies with the exception of a 2009 Dutch quality of life study, in which 20% of the patients also reported itching on depigmenting areas. The itching symptom may have been overlooked in earlier studies for a number of reasons, but now that it is on the radar, subsequent studies should be able to tell us more.

Early-Onset Compared to Later-Onset Vitiligo

We learn more about early-onset vitiligo when we compare its characteristics to later-onset vitiligo, though comparison studies on these two groups are both new and relatively few in number. Dr. Nicolaidou's team found a number of distinguishing features including:

Childhood-onset vitiligo features:

Initially presents on different sites of the body than adult-onset
Higher prevalence of allergic diseases
Lower frequency of thyroid disease
Thyroid disease was associated with duration of vitiligo and positive family
history of thyroid disease, and not with female gender, as in later-onset vitiligo
Has slower rate of progression overall, as it includes more cases of
segmental vitiligo, which is less progressive
Fewer reports of emotional stress at onset of disease

The early-onset patients reported their vitiligo most commonly first appeared on the head and neck area and on their lower limbs. Conversely, the later-onset group reported their initial onset of disease most commonly appeared on the upper extremities, including hands and fingers. All these findings are consistent with other studies. There were similar percentages of people from both groups who presented with the various subtypes of NSV, such as focal, generalized, acrofacial and acral. However, 6.6% in the early-onset group had SV, compared to none in the later-onset group.

One study showed that both children and those who develop vitiligo later in life have similar rates of family history of thyroid disease, though the rate for children is slightly higher (59% vs. 48%), and both are higher than in the normal population. Children with vitiligo also have a higher probability of thyroid autoantibodies, which may appear well before clinical symptoms of thyroid dysfunction. The Greek researchers theorized that while children with vitiligo had fewer associated autoimmune and/or endocrine disorders when compared with adults, thyroid disease in this group might just not yet be evident (or subclinical). They speculated that thyroid disease might therefore manifest itself as young people in this group grow older, and felt that it was important for parents to be aware that both boys and girls with vitiligo may face this possibility. Thyroid disease in later-onset vitiligo is more predominant in females than in males. Another, more recent (April 2012) French study headed by Dr. Ezzedine found that childhood vitiligo is strongly associated with personal and family history of atopy, suggesting that the predisposing immune background in vitiligo is not limited to autoimmunity.

Antigen - any substance provoking the production of antibodies as an immune response.

Atopy - A genetic predisposition toward the development of immediate hypersensitivity reactions against common environmental antigens (atopic allergy), most commonly manifested as allergic rhinitis (hay fever), but also as bronchial asthma, atopic dermatitis, or food allergy.

Similar rates between early-and later-onset vitiligo were also seen in family history of vitiligo, though the rates were much lower than those for thyroid disease: 35% of children have family history of vitiligo vs. 33% of those developing it later. Vitiligo was distributed equally between the sexes in both groups. The higher rates of thyroid disease history and lower rates of vitiligo history are consistent with those found in other studies.

Future Research

Vitiligo is a disease with several subtypes and various clinical expressions. Increasingly, we are learning that these subtypes may involve different biological pathways. For example, since SV may not have an autoimmune connection while NSV does, different biological pathways may be involved.

The data shows that those with NSV are more than twice as likely to have a family history of vitiligo and/or autoimmune disorders. This fact has been demonstrated in a number of studies. Can we learn more about the autoimmune mechanism from studying these families?

Various markers for inflammation and autoimmunity have been identified as being associated with NSV.

Markers for Non-Segmental vitiligo

halo nevi
itch
Koebner phenomenon
stress
thyroid autoantibodies

More information on these markers could help us better understand the biological processes behind vitiligo and its subtypes. For example, though these autoimmune markers are predominantly seen in cases of NSV, some recent studies found that about 10% of people with SV have halo nevi. Dr. Ezzedine's group advises that cases with SV associated with signs of inflammation and autoimmunity, such as itching and halo nevi, should be carefully followed up because of a possible increased risk for MV. A Belgian research team speculates that these people might constitute another subtype of SV.

The overlap between SV and NSV in the form of MV has been identified as an area needing more study. As noted above, SV shares some of the previously-identified autoimmune markers with NSV, though in far less frequency. Does SV share genes or some biological pathway with NSV in the expression of these markers? Learning more about these genes and/or pathways could move scientists closer to developing more effective vitiligo therapy. Pigment cell antibodies have previously been reported to be associated with active disease. Does this offer both basic research and treatment clues? Similarly, does the Koebner phenomenon indicate active disease? This question remains unresolved, as the data is conflicting on this point.

Larger epidemiological and pathologic studies are needed to better understand the biology behind each subtype and the role of inflammation and autoimmunity. Such studies could help us explore significant questions that the data has raised and/or fill in the gaps and conflicts in the data that currently exist. Since currently many studies are conducted at university centers that tend to attract more severe cases, studies also including a more diverse group of private physician practices would help ensure that a wider sample of patients are included. The use of uniform data collection tools and statistical methods would also increase the power of such studies, as meta-analysis of the results would be much easier and lead to more definitive answers.

Meta-analysis - Use of statistical methods to
analyze the results from several independent studies

What Does This All Mean for the Vitiligo Patient, VSI and Researchers?

Vitiligo researchers are intensifying their in-depth focus on the biology and genetics of vitiligo. We are now learning there are potentially more subtypes than previously identified, and we have clues to how the disease is triggered and many of the pathways that could be involved. These insights should ultimately help improve our understanding of this disease and how to treat it. Hopefully, they will also help us anticipate and treat any secondary disease, such as thyroid disease, associated with vitiligo.

For the vitiligo patient, these findings are reminders of additional risks and symptoms faced by those with vitiligo. Vitiligo patients with more aggressive NSV, and laboratory evidence of autoimmunity, are more likely to experience the Koebner phenomenon and itching prior to depigmentation, as well stress as a trigger. They are also more likely to develop thyroid disease. Children with a family history of thyroid disease, especially those with non-segmental vitiligo, have a greater chance of developing thyroid disease, either as a child or later in life. Female adults with late-onset vitiligo are also at greater risk of developing thyroid disease. Because an antibody known to be a specific marker of autoimmune thyroid disorders (thyroid peroxidase antibody, or anti-TPO) is more commonly found in vitiligo patients, especially young women, many experts recommend that vitiligo patients in these high-risk groups are regularly assessed for thyroid disease.

For VSI, our collaboration with a network of researchers gives us the opportunity to focus attention on important research questions and implement strategies on how to address them. VSI's participation in facilitating the collaboration between patients and researchers around the world will be vital. We are in a unique position to help make these large-scale studies possible through our ability to reach out to the vitiligo patient community, connecting them in "real time" with the very latest research recruitment opportunities, and presenting current results.

For vitiligo researchers, the ability to correlate findings in genetic and immunological studies with these classifications and subtypes will lead to an increased understanding of vitiligo risk factors, possible avenues of treatment and, ultimately, ways to stop the development or progression of vitiligo.

Working together, VSI and its members will be in a position to contribute important patient perspective to the design of research questionnaires, methods of collection, and patient selection. VSI will continue to work with and support this international patient/research collaboration, to help ensure its continuation and a brighter future for the vitiligo patient community.

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Potential New Vitiligo Treatment

Clinical Trial Stalled Due to Lack of Volunteers

For our past two newsletters, VSI has featured a vitiligo clinical trial
for the drug simvastatin that is recruiting volunteers. Because this drug
is already on the market, if found safe and effective as a vitiligo treatment,
it could be prescribed right away.

VSI contacted Dr. Harris about the progress of this
clinical trial, and obtained the following information:

"We have enrolled and completed 11 subjects but need 14 more. The investigational drug has generally been well tolerated in our subjects to
date, but without a sufficient number of participants, we may not have
adequate data to make conclusions about whether or not it will be effective for vitiligo."

John Harris M.D.

VSI : Why weren't women included in this clinical trial?

Harris : The FDA has evidence that women were at a slightly higher risk than men for complications from the high-dose simvastatin, so they asked us to start with men and, if we found it was safe and effective, we could then consider enrolling women. We have another year or so before unblinding the study to analyze the results, so we will not be able to enroll women sooner than that.

VSI : If the clinical trial shows safe and effective results, how long might it take for this treatment to be approved for use in vitiligo by the FDA?

Harris : " Simvastatin is already FDA-approved for the treatment of high cholesterol. Finding a new use for a medication that is already approved for another purpose (called "repurposing") is a huge advantage over starting with a completely new investigational drug because it can be prescribed immediately "off-label," meaning it can be prescribed by a physician for another disease based on that physician's best judgment. So, if we are able to show that simvastatin is an effective treatment for vitiligo, it could be prescribed immediately in this way. Even topical steroids and tacrolimus ointment (common therapies for vitiligo) are used off-label, since they have not been FDA-approved specifically for vitiligo treatment. "

Click here for more information on this clinical trial.

New Sunscreen Labeling to Take Effect
The goal is a more informed consumer

In our Fall 2011 newsletter, we announced the Food and Drug Administration's (FDA) plans for new sunscreen labeling standards to make it easier for the consumer to evaluate and compare the level of skin protection offered by the various sunscreen products. We are pleased to announce the roll-out of labeling designed to help consumers better manage their risk of skin cancer. Sunscreens meeting these new standards are now being distributed to retail stores. We thought a review of these new requirements and their background might be helpful now that they are in use.

The new, consumer-friendly label will make it easier for the buyer to make an informed purchase, as only those products that protect against both UVA and UVB radiation, and are SPF 15 or higher can claim to be "broad spectrum" and protect against sunburn. If the label also says to "be used as directed, with other sun protection measures," it can then also state that the product will "reduce the risk of skin cancer and early skin aging."

Any product with an SPF below 15 that does not protect against both UVA and UVB is required to carry a warning on its label that states: "Skin Cancer/Skin Aging Alert: Spending time in the sun increases your risk of skin cancer and early skin aging. This product has been shown only to help prevent sunburn, not skin cancer or early skin aging.”

Another new FDA requirement prevents any sunscreen product label from claiming waterproof or sweatproof protection. If a product claims that it is "water resistant," the label must state how long a user "can expect to get the declared SPF level of protection while swimming or sweating, based on standard testing," according to the FDA.

The FDA will allow a phase-in of the newly-labeled sunscreens, allowing retailers to sell existing stocks of the old sunscreen products. So for a time, consumers may be faced with a mix of sunscreens with the old and new labels.

Greater recognition of UVA as a cancer-causing agent

In recent years, scientific interest has intensified its focus on UVA as a cancer-causing agent. Traditionally, UVB had been considered the sole cancer-inducing culprit, so it was the focus of sunscreen claims. We now know that UVA also contributes to skin cancer, as it penetrates deeper into the skin, adds to DNA damage, and plays a larger role in skin aging. As a result, more sunscreen manufacturers have been gradually adding UVA-blocking agents to their products.

Dr. Steven Q. Wang, director of dermatologic surgery and dermatology at the Memorial Sloan-Kettering Cancer Center, noted that in the 1990s, over 80% of sunscreen products claimed to protect against UVA rays, despite testing showing that only 5% actually contained a UVA blocker. Although those statistics had improved by 2009, with 80% claiming UVA protection, while only 70% actually provided it, there is still room for improvement.

Development of more UVA-blocking agents on horizon

Though there are many UVA blocking agents in use in other areas of the world, the most commonly used in the United States are avobenzone, oxybenzone, and zinc oxide. However, there are several additional UVA blocking filters currently awaiting FDA approval.

Safety of sunscreen ingredients

Concerns have been raised in recent years about the safety of various sunscreen ingredients. In VSI's Spring 2011 newsletter issue, we reviewed some of these concerns. One group, the Environmental Working Group (EWG), a Washington-based, nonprofit consumer group, has been vocal in its concerns about the safety of some ingredients, including oxybenzone and retinyl palmitate (a vitamin A derivative). The EWG also recommended that consumers choose products with zinc oxide, titanium dioxide or 3% avobenzone as active ingredients. In addition, in its opinion, the sunscreen sprays and powders are not as effective as creams or lotions.

The EWG also concluded that children's sunscreens contain the most effective and safest ingredients, as 60% of the 180 products marketed for children have ingredients such as minerals, which are considered effective. Only 40% of those marketed for the general public have minerals. Moreover, the sunscreens for children are less likely to contain oxybenzone, which the group said can cause allergic reactions. In its latest annual sunscreen review, the EWG reported that of the 1,800 sunscreen products it evaluated, about 25% meet its safety standard. That's up from 20% in 2011 and 8% in 2010.

The American Academy of Dermatology (AAD) disagrees with the EWG, citing the lack of evidence that oxybenzone and retinyl palmitate are dangerous. Dr. Wang agrees, but acknowledges that the controversy has led some manufacturers to remove the vitamin A derivative. Dr. Wang said oxybenzone might eventually be removed as more UVA blocking agents are approved.

Future steps

Over recent years, we have learned as a result of ongoing scientific investigation that not all sunscreens are equally effective in protecting against the sun's radiation. Research now shows that broad-spectrum sunscreens that protect against the effects of both UVB and UVA offer the best protection against the effects of the sun.

At the same time, questions have been raised about possible adverse effects from sunscreen ingredients. In our Fall 2011 newsletter, we reported on the FDA's safety finding relating to nanoparticles, one of the sunscreen ingredients of concern to some researchers and public interest groups. The FDA has announced that it will be continuing its safety review of other sunscreen ingredients, as well as the effectiveness and safety of new UVA-blocking agents. The agency will be including data for sunscreen-containing wipes, powders, body washes, sprays, and shampoos in addition to the traditional sunscreen products. The progress of these FDA investigations and new findings or proposals will be featured in future newsletter issues.

For Additional Information:

EWG Sunscreen Guide

New Sunscreen Labeling to Help Consumer-VSI Fall 2011 Newsletter

Sunscreens: Pros, Cons & Alternatives-VSI Spring 2011 Newsletter

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Camp Discovery 2013

The American Academy of Dermatology (AAD) is celebrating the 20th Anniversary of Camp Discovery with six weeks of Camp in five states; providing an amazing camp experience to approximately 350 children each year.

There is no fee to attend; full scholarships, including transportation, are provided by the AAD through generous donations from its members, outside organizations and individuals. All campers must be referred by their dermatologist.

2013 Dates:

Little Pine, Crosslake, MN – ages 10-14 – June 23-28
Camp Reflection, Carnation, WA – ages 8-16 – June 24-28
Big Trout, Crosslake, MN – ages 14-16 – July 7-12
Camp Horizon, Millville, PA – ages 8-13 – August 10-17
Camp Dermadillo, Burton, TX – ages 9-15, August 11-16
Camp Liberty, Hebron, CT – ages 8-16, August 11-17

Referral forms are available now, and the application deadline is April 15, 2013. For more information about attending or volunteering, please visit the Camp website at www.campdiscovery.org, or contact Janine Mueller at 847- 240-1737, or
by email: [email protected]

To read a firsthand report from a VSI member
who attended Camp Discovery: Click Here

What's On Your Mind?

Q. Is Vitiligo Contagious?

Vitiligo is not contagious. It is a genetic disease, and the likelihood of developing vitiligo results from different combinations of susceptibility genes, even in the same family. Different family members inherit different genetic combinations, just as they do for height or intelligence. Even among identical twins, both develop vitiligo only one-fourth of the time. Identical twins share all of their genes, but they don't share their environmental exposures and other life-events. While it is known that environmental triggers are involved, it is still uncertain as to what they are, with stress (physical and emotional), skin trauma, and exposure to certain chemicals being possible triggers.

Q. After reading the vitamin D update in the last newsletter, I was wondering if NB-UVB affects vitamin D levels like sunlight does?

As it turns out, the answer is yes! Several recent studies have shown that NB-UVB is actually more effective at raising serum levels of vitamin D [25(OH)D3] than oral vitamin D supplementation. If you are using NB-UVB therapy, you should mention that to your doctor when discussing, or assessing the results of, vitamin D testing. Your vitamin D test results might show an adequate level of vitamin D while you are using the NB-UVB therapy, but they could drop considerably if you were to take a break from the treatment. Under those circumstances, it might be a good idea to discuss the need for oral vitamin D supplementation with your doctor.

Medical News Updates

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

Researchers Modify a Protein that Returns
Pigment to Mice with Vitiligo

Researcher Dr. Caroline LePoole and her colleagues from Chicago's Stritch School of Medicine at Loyola University have created a modified protein that appears to halt the autoimmune response that causes pigment loss in vitiligo.

The research team carefully studied the amino acids that make up the protein HSP70i because of its known involvement with this autoimmune response. Once they identified the region of the molecule they believed responsible for activating vitiligo, they introduced their modified protein into a group of dark colored mice that had developed white patches of fur associated with vitiligo. Within a matter of weeks, the color was fully restored to the white patches in the mice receiving the injection.

Jeffrey Karaban, a Chicago dermatologist not involved with the research, said that if this protein can be produced consistently as an effective treatment, the results would be "life altering" for vitiligo patients.

Editor's note : VSI contacted Dr Le Poole, who is a member of VSI's Medical and Scientific Advisory Committee, with questions about the next steps in this research. Below are her responses.

VSI : In the best case scenario with no problems, how long might it be before this drug would be ready for clinical trials in humans?

Le Poole : We have already applied for further funding to support this work. Provided that comes through, once we acquire all of the regulatory approvals, and have tested the safety and efficacy of the product in different models, the earliest we could start a clinical trial in human patients would be two years .

VSI : If clinical trials prove this drug to be a safe and effective vitiligo treatment, how often might the treatment need to be repeated?

Le Poole: We will not know the types of effects of the drug for humans until it has been tested in human subjects.

Vitamin D supplement with large meal promotes absorption

Researchers at the Cleveland Clinic Foundation report that taking vitamin D supplements with a large meal improves their absorption and raises the blood level of vitamin D. They asked 17 patients who were not responding to treatment for vitamin D deficiency to take their usual vitamin D supplement with the largest meal of the day. The serum levels of 25(OH)D increased by 50% as a result. Similar increases were seen with vitamin D doses taken for various medical conditions, the investigators reported.

Environmental factors trigger onset of
vitiligo for some vitiligo patients

Dutch investigators surveyed 1,264 vitiligo patients to identify any "provoking” factors that may have triggered the onset of their disease. Three hundred, or 24% of the patients, identified environmental factors they associated with the onset of their vitiligo. Questionnaires were sent to 246 patients in this group to gather more information about their experience; 177 questionnaires were returned, for a response rate of 72%.

Emotional stress was cited by over half of these patients as a provoking factor (98 patients or 55.4%), followed by sunburn (51 patients or 28.8%), mechanical factors (also known as the Koebner phenomenon) (34 patients or 19.2%), and other factors (20 patients or 11.3%). If you combine the mechanical and sunburn categories, the incidence of the Koebner phenomenon (vitiligo triggered by an injury or trauma to the skin) was about 48%. Respondents could select more than one factor.

There were 29 patients (16.4%) who stated that chemicals, primarily solvents, triggered their vitiligo. However, upon further investigation of this group, only four patients' claims could be corroborated as having experienced a chemical trigger. Two participants reported para-tertiairybutylphenol (PTBP) as the triggering chemical, and one each reported the chemicals captan and diphencyprone.

Editor's note: PTBP formaldehyde resin is a phenol-formaldehyde resin that is mainly used in adhesives. It is principally found in glued leather goods such as shoes, handbags, belts and watchstraps. Other sources of PTBP formaldehyde resin include DIY glues, varnish and lacquer resins, motor oil additives, rubber antioxidants, printing inks, fiberglass products, plywood, masonry sealant, insecticides, deodorants, and commercial disinfectants. Captan is the name of a general use pesticide (GUP) that is also a fungicide. It is used to control disease on fruits and vegetables as well as ornamental plants. It also improves the appearance of many fruits, making them brighter and healthier-looking. Diphencyprone is an experimental sensitizing agent used by some dermatology centers to treat skin conditions by contact immunotherapy. It is most often used to treat alopecia areata.

Early-onset vitiligo patients found to
have greater risk of allergic reactions

French researchers observed 679 vitiligo patients over a five-year period (January 1, 2006 to July 1, 2011) to identify any differences between those who developed vitiligo before the age of 12 (early-onset) and those for whom onset of vitiligo occurred at or after the age of 12 (later-onset). One of their findings is relatively new – that there is a higher prevalence of a personal and family history of atopic dermatitis in patients with early-onset vitiligo as compared to patients with later-onset vitiligo. This association, they commented, had been reported in only one other study. They felt that this association deserves further investigation, especially since both vitiligo and atopic dermatitis share certain symptoms and genes.

They observed that while inflammation, a key symptom of atopic dermatitis, is not a typical clinical feature of vitiligo, there is some inflammation on the edge of progressing (active) lesions in vitiligo. They also found that 19% of early-onset patients and 25% of patients with later-onset vitiligo reported itching, a symptom also common to atopic dermatitis. In addition, vitiligo has recently been linked to three genes, TSLP, FOXP3, and CTLA-4, that are also associated with allergic disorders.

Editors note: The study authors noted that early-onset vitiligo is "strongly associated with personal and family history of atopy." Though in this study they focused on atopic dermatitis, atopy by definition includes a broad range of allergic responses. Refer to "atopy" definition in the first article for other examples.

Click Here: For more information on how and when to take vitamins and supplements.

Research & Clinical Trials

Clinical Trial in Massachusetts!

A phase-II, randomized, placebo-controlled trial
of simvastatin in generalized vitiligo

Principle Investigator: John E. Harris, MD, PhD

Study Location:
UMass Memorial Medical Center in Worcester, MA

A research trial at UMass is studying whether simvastatin, a common cholesterol medication, is useful in treating vitiligo. The study includes taking either this medication or a placebo and visiting UMass 8 times over a period of 6-7 months. You will be compensated for your time and receive free parking.

You may be eligible if you are a patient with vitiligo and are:

A male between 18 – 64 years of age
Not currently taking a statin medication for heart disease

If you are interested in participating or would like more detailed information:

Call: (508) 856-2800 or Email: [email protected]

Major Expansion of Vitiligo Genetics Project

University of Colorado
Health School of Medicine

International Study to Find Vitiligo Genes

Additional Patient Volunteers Needed
From the USA and Canada

Scientists with the international VitGene Consortium project spanning 18 countries are working to understand the biology of vitiligo so that more effective vitiligo treatments can be designed. Thanks to your involvement, the first phase of this research project has been very successful, discovering many vitiligo genes, resulting in real breakthroughs in our understanding and opening new doors to developing potential new treatments.

We now plan to expand these studies to discover additional vitiligo genes, giving us even more targets for treatment. That means we need to double the number of patients. Our new goal is to enroll 3000 additional Caucasian (white) vitiligo patients over the next two years. Your help is essential.

If you are from the USA or Canada and have not previously taken part, your participation is vitally needed. Please complete the questionnaire below then email directly to Dr. Richard Spritz at the University of Colorado School of Medicine using the email address provided at the end of the questionnaire.

Your personal information, by law,
will be kept private and will not be sold or disclosed .

Join with us to work for a vitiligo-free future!

Click here to download the questionnaire

Click Here to Read Research Updates on this Study

Patients and Controls Invited to
Participate in Online Vitiligo Survey

Sponsored by Nanette B. Silverberg, MD

Departments of Dermatology,
St. Luke's-Roosevelt and Beth Israel Medical Centers, New York, NY

Dr. Silverberg is conducting a survey to review medical, genetic,
psychological and nutritional factors that may cause or exacerbate vitiligo.

Individuals with vitiligo that have been previously diagnosed
by a physician are welcome to contribute to this survey.
Friends and family without vitiligo are also encouraged to
respond as control subjects. Just answer the questions that are applicable.
The survey will not include any personal information that may
identify you to the public.

Click Link to Select the Appropriate Survey Below

Participate in this Survey as an Adult with Vitiligo

Adult Vitiligo Survey

Participate in this Survey For Your Child

Survey For Your Child

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