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In This Issue

Director's Message: One Wish

Flu Shots, Allergy Shots,
and Childhood Vaccines

What's On Your Mind?

  • Where Can I Buy the
    Depigmentation Prescription?

Medical News Updates

  • Allergy Shots and Autoimmunity

  • Stem Cell Research and Vitiligo

Research & Clinical Trials

Bibliography & Sources

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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
P.O. Box 3565
Lynchburg Va 24503

(434) 326-5380

Message From the Executive Director

VSIVSIDear Members and Friends of VSI, 

If you had a magic lamp...... and you could change one thing ......... would it be your vitiligo? That’s a pretty big question. Vitiligo has definitely had a significant impact on my life. I don’t like it – at times I resent it for all I feel it’s taken from me. Even after 26 years of living with this disease, it still affects decisions I make and the way I live my life, every single day.

Unless they’ve walked in your shoes, very few people understand what it’s like to have a disease like vitiligo. No, it doesn’t hurt.... physically. But, does that mean that vitiligo should be dismissed as a disease, bypassed for research dollars, or that those affected are somehow less worthy of receiving treatment? Absolutely not!

VSI is actively working to inform researchers, clinicians, insurers, government, and funders on the needs of our community. We’ve made great strides, but comprehensive change requires unified support and funding.

There are things we can’t change.
If I had one wish, I wouldn’t use it for something that I believe I can change.
At the end of the day, I believe I can make a difference in the future of vitiligo.

Will you join me?

With Your Help We Can Change Lives

VSI is a member-supported 501(c)(3) charitable organization
working on behalf of the millions of people affected by vitiligo.

Become a VSI Supporting Member!

Support VSI’s work through PayPal

Jackie Gardner
Executive Director


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


Click Here to View Complete Newsletter



Flu Shots, Allergy Shots, and
Childhood Vaccines: OH MY!

Each Fall as flu season appears on the horizon, VSI experiences an uptick in requests for information on the potential for flu vaccinations to cause problems for vitiligo. Spring and Fall raise similar concerns from those suffering from allergies, and childhood vaccinations are an ongoing concern for many parents.

Each of these types of immune therapy plays a very important role in overall health and wellbeing. However, as with any type of medical therapy, each brings the potential for a range of side-effects that is a source of great concern for many.

Vitiligo, Autoimmune Disease, and Vaccinations

Rather than just addressing the general safety profiles of the various therapies, the objective of this article is to delve into the more specific concerns for those affected by vitiligo.

  • Will a flu shot make my vitiligo worse?

  • Are live vaccines safe to use with vitiligo?

  • Will allergy shots make vitiligo worse?

  • Will multiple vaccines at one time cause problems for vitiligo or
    possibly trigger other autoimmune diseases?

  • Is immune therapy safe for those with autoimmune disease?

Because vitiligo is an autoimmune disease, many of the questions we receive relate to autoimmunity, which can also be complicated and confusing. So, before we get into the specific types of vaccines, we’re going to begin with a bit of background information to provide a foundation of understanding for the more specific therapies.

Autoimmune vs. Immune Deficient



One common area of misconception is the difference between an autoimmune disease and immune deficiency.

Immune deficiency (or immunodeficiency disorders) reduces the ability of your body’s immune system to defend itself from foreign cells such as bacteria, viruses, parasites, or disease, such as cancer. An example of an immunodeficiency disorder would be HIV (human immunodeficiency virus), which can lead to the disease AIDS (acquired immunodeficiency syndrome).

Autoimmune diseases are the result of the other side of immune dysfunction, whereby the immune system becomes overactive, or hyper-responsive, and begins mistakenly attacking cells within its own body. In the case of vitiligo, your body’s immune system is attacking your melanocytes, which are your pigment-making cells.

Treatment for autoimmune diseases generally focuses on reducing or suppressing this overactive immune response. Some autoimmune diseases affect multiple body systems, causing debilitating side effects and requiring long-term, systemic, immune-suppressing medications. These types of drugs are typically administered as tablets, capsules, liquids, or injections, and can weaken the immune system, causing secondary immunosuppression.

VSIThough vitiligo is treated with immune-suppressing therapies, they are most often topical ointments or UV light, which do not suppress the immune system to the extent of becoming immune-compromised. The exception to this would be the few short-term systemic treatments prescribed to stabilize very active and widespread vitiligo, such as oral or injected corticosteroids like prednisone, or triamcinolone acetonide.



Autoimmune Disease and Vaccines

Autoimmune diseases occur only in those genetically predisposed; however, they require an environmental trigger. In the case of vitiligo, this is why with identical twins, both twins develop vitiligo only 23% of the time. Infections and viruses have been established as leading environmental triggers of autoimmune disease.

It is a rare exception for a non-immunocompromised person with an autoimmune disease to experience the onset or worsening of disease after a vaccination. However, many vaccine-preventable infections are known to negatively affect the course of autoimmune diseases.

Vaccine-related autoimmunity, though quite rare, does occur in what would seem to be a susceptible subpopulation. One such documentable event occurred in 1976, when the Guillain-Barré syndrome (GBS) was higher than normal in those who received the swine flu vaccine. Research indicates that those vaccine recipients had a higher risk (about 1 additional case per 100,000 vaccinated) of developing GBS than those who were not vaccinated.

Many studies have been done since that time to determine if other flu vaccines were associated with an increased risk of GBS. Almost all of the studies found no association; however, two suggested that approximately 1 in 1 million vaccinated people may be at risk of developing GBS.

For those who have reason to believe they might be a part of this subpopulation, it would be wise to discuss the risk vs. benefit of vaccines with their doctor.

Live Vaccines

According to  “Live, attenuated vaccines contain a version of the living microbe that has been weakened in the lab so it can’t cause disease. Because a live, attenuated vaccine is the closest thing to a natural infection, these vaccines are good “teachers” of the immune system: They elicit strong cellular and antibody responses and often confer lifelong immunity with only one or two doses.”

Several types of live-attenuated viral vaccines (LAV), such as live-attenuated influenza, measles, mumps and rubella, oral polio, and rotavirus, have been used safely by healthy individuals for decades. However, their use is not recommended for those considered immunocompromised, or with weakened immune systems.


Flu Shots

Who Should Get a Flu Shot? According to the Centers for Disease Control (CDC), all age groups are susceptible to influenza and “everyone 6 months and older is recommended for annual flu vaccination with rare exception.”

Flu Vaccinations Are Particularly Important for Those at High Risk of
Developing Serious Flu-Related Complications.

Children younger than 5, but especially children younger than 2 years old
Adults 65 years of age and older
Pregnant women (and women up to two weeks postpartum)

Those with medical conditions such as:


Weakened immune system due to disease or medication (such as people with HIV or AIDS, or cancer, or those on chronic steroids or chemotherapy

Endocrine disorders including the following associated with vitiligo: Hypo- and Hyper- Thyroid Disease, Hashimoto’s Thyroiditis, Graves’ Disease, Type 1 Diabetes, Addison’s Disease, Adrenal Disorders, and Metabolic Syndrome
Click here for a complete list of those considered at high risk.
Click here for a complete list of endocrine disorders.

Who Cannot Get a Flu Shot?

  • Children under the age of 6 months

  • People who are sick or not feeling well

  • Anyone who has ever had Guillain-Barre Syndrome
    should talk with their doctor prior to getting a flu shot

  • Anyone with severe allergies to the flu vaccine, or any of the
    vaccine ingredients, such as gelatins antibiotics, or eggs.

Because vaccines are developed by being injected into chicken eggs to incubate, if you have an allergy to eggs, you should discuss the options with your physician. There is an alternative formula called Flublok that does not use the influenza virus or chicken eggs in its manufacturing process.
Click Here for CDC 2016 Update on Flu Vaccine for People with Egg Allergies

Live Flu Vaccine Not Available in 2016

VSIFlumist is a live attenuated influenza vaccine (LAIV) formulated as a nasal spray and has been around since 2003 as an alternative to the flu shot. In years past, if you were between the ages of 2-49 years, healthy, and not immunocompromised, you may have been a candidate for the Flumist vaccine. However, as of June 22, 2016, this will not be an option. Due to a significant decline in the vaccine effectiveness, the CDC’s Advisory Committee on Immunization Practices (ACIP) voted that the nasal spray flu vaccine not be used in the 2016-2017 flu season.
Click here
for CDC 2016 - 2017 Flu Vaccine Updates

Childhood Vaccines:
Combination Vaccines and Multiple Simultaneous Immunizations

Another area of concern for many parents is the potential of a severe reaction or side effect as a result of immunizations, the rising number of recommended vaccines, and especially the number they receive at one time. According to 2016 research, the risk of serious side effects from childhood vaccines is statistically considered as rare.

Click Here for Additional Information on the Side Effects of Specific Vaccines

Regarding the overall increase in the number of childhood vaccines, and the number given in a single office visit, there are actually two separate issues to address.

  1. The actual number of needle sticks
  2. The number of individual vaccines

Twenty years ago, children received about 5 shots that included a total of 7 vaccines. Today, the recommended childhood vaccine schedule includes over 20 shots that include about 11 vaccines by age 2.

It’s important to understand that the immunological response is caused by the exposure to the antigens, (the proteins in the vaccines that stimulate the immune response) not the number of needle sticks. While it is true that the number of recommended childhood vaccines has increased substantially over the years, the vaccines used today are actually easier on the immune system than those of the past because they contain a greatly reduced number of antigens.

For example, in the 1990s, the DTP (diphtheria, tetanus, and pertussis) vaccine exposed the body to more than 3,000 antigens, with the total number of antigens from childhood vaccinations reaching up to 15,250 by age two.
By comparison, the current version (DtaP) uses only 4 to 6 antigens, with the total number of exposure to antigens for all vaccinations being around 315 by the age of 2.

Spreading Out Vaccines

A 2012 survey reported that nearly all pediatricians had been asked by parents if they would “space-out” their children’s vaccines. In spite of the fact that to do so would go against expert advice as well as their own judgement and training, 74% agreed. The main reason given for agreeing to this practice was their concern for losing the patient’s business.

The Physicians Also Cited the Following Concerns:

The 2015 measles outbreak began when 40 people were exposed while visiting Disneyland theme parks in Southern California. According to the CDC, this outbreak was the direct result of families who deliberately delayed or refused to vaccinate their children. In 6 weeks’ time, their decision resulted in infecting 125 people from 7 states.

A new survey taken after the Disneyland outbreak revealed that pediatricians across America are under pressure to refuse to accept unvaccinated children. Parents do not want to take their child to a clinic where they risk exposure to unvaccinated individuals.
Click Here to View a Vaccine Screening Checklist for Children and Teens

Allergy Shots and Autoimmune Disease

Allergy symptoms can not only make a person feel miserable, but if left uncontrolled can lead to other problems such as migraines, sinus infections, eczema, ear infections, and asthma. Over time, they can wear down or compromise the immune system, leaving it vulnerable to other underlying conditions, such as autoimmune disease. However, many people are concerned about the possibility of allergy immunotherapy triggering or worsening an autoimmune disease.

Subcutaneous allergen-specific immunotherapy (SCIT), commonly known as allergy shots, has long been considered a safe and effective allergen immunotherapy used to desensitize the immune response. Side effects are typically local (at the site of injection) and mild, and are primarily dependent on the appropriate dosage, rather than the specific allergen. In most instances, if a side effect is observed, lowering the dosage corrects the problem. Because of the risk, albeit quite rare, of a serious allergic reaction such as anaphylaxis, this type of treatment should only be administered in a medical environment.

Several long-term observational studies have investigated the potential of allergy shots (SCIT) as a trigger of autoimmune disease. A Danish study compared 18,841 people who received SCIT with 428, 484 that received conventional allergy therapy (CAT), such as nasal steroids or oral antihistamines, over a period of 10 years, and found that those receiving SCIT were associated with a lower risk of autoimmune disease as well asacute myocardial infarction (heart attacks), ischemic heart disease, and a decreased all-cause mortality (death from any cause).

In October 2015, a Polish long-term (20 years) observational study, evaluated the incidence of autoimmune disease and/or the presence of serum autoantibodies, in 1,888 patients who had received specific immunotherapy (SIT) compared to two control groups: a) allergic patients who had never received SIT, and b) people without allergies. The study found no significant difference in autoimmune disease prevalence between the allergic patients with or without SIT.

Allergy Shots Are Not Recommended for the Following:

  • Anyone immunocompromised

  • Anyone who has had a recent heart attack, unstable angina, or other heart conditions

  • Anyone taking beta-blockers

  • Children under the age of 2

  • Anyone unable to communicate clearly (must be able to report reactions). For this reason, some doctors do not give allergy shots to children under the age of 5.


In America, the Centers for Disease Control and Prevention (CDC) continuously monitors the safety of vaccines by working in close partnership with other federal, state and local agencies, as well as private entities.

As noted, though the risk of side effects is in most cases considered rare, vaccines, like any medicine, are capable of causing severe side effects or allergic reactions.

The information provided in this article is for informational purposes and not intended as medical advice. Each person’s health is unique to their own set of circumstances. All medical decisions should be discussed with your health care provider.

Click Here for Additional Information on Vaccine Safety and Monitoring


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What's On Your Mind?

Q.Where Can I Buy the Depigmentation Prescription?

VSII finally found a doctor who agreed to prescribe depigmentation for me, but now we can’t find the prescription medication. Is Benoquin still available? If not, would an over-the-counter skin lightening product work?

  1. The brand name product known as "Benoquin" is no longer being made. However, the generic product, Monobenzyl ether of hydroquinone (MBEH) is still available from compounding pharmacies. Commonly known as monobenzone, the prescription can be ordered in strengths of 10%, 20% (most often), 30% or 40%.

Unlike the much lower strength commercial and prescription cosmetic products used for skin lightening, monobenzone is a systemic therapy used for patients with widespread vitiligo who have failed other repigmentation therapies.
While many of the pharmacies experience spot shortages from time-to-time, thankfully, they typically do not all run out at the same time!

For a list of compounding pharmacies that make monobenzone, log on to your VSI account and go to the Depigmentation Forum, then select the post at the top titled “Depigmentation Overview.” Most of these pharmacies are able to ship (within the US), so it’s not necessarily important that they be local.
If you’re still having problems, you can consult Professional Compounding Centers of America.

Medical News Updates

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

The Relationship Between Allergy Shots and Autoimmunity

Many people worry that because allergy shots intentionally challenge the immune system, that they will somehow trigger a negative autoimmune response. This concern inspired Dr. Andrzej Bozek of Poland and his group to see if people who had received allergy shots (specific immunotherapy, or SIT) had indications of autoimmune disease or had produced autoantibodies in their blood serum.

The researchers observed 1,888 patients, 902 women and 986 men, who had received SIT 20 years previously. They looked for new occurrences of autoimmune disease or autoantibodies in the blood. The group that had received SIT was compared to two different control groups: a) allergic patients who had not received SIT, and b) people without allergies.

While no difference in prevalence of autoimmune diseases was found between allergic patients whether or not they had received SIT, we found it interesting that Dr. Bozek’s group found a higher incidence of 4 different autoimmune diseases in the nonallergic control group, as well as a significant increase in 8 different autoantibodies in the same group, over this 20-year time period. The most commonly found autoimmune disease in the nonallergic group was Hashimoto’s disease, which is also the most common autoimmune disease associated with vitiligo patients.

The researchers concluded that receiving SIT was not related to triggering autoimmune disease or the production of autoantibodies in the blood of allergic patients.


Stem Cell Research May Help Repigment
Feet, Hands, Lips and Other Glabrous Areas

Vitiligo is an autoimmune disease that targets melanocytes (pigment-making cells), which are located in the hair follicles. Consequently, areas of the body that do not have hair or hair follicles can be quite difficult to repigment. External skin that is naturally hairless and devoid of hair follicles is referred to as glabrous skin.

Stem cell research is opening new possibilities for many health disorders. The discovery of skin stem cells could benefit one of vitiligo’s most challenging treatment conundrums. Adult stem cells are responsible for cell regeneration and are typically dormant unless activated by some type of disease or injury. When called upon, they undergo a process called differentiation to form the specialized cell types of the tissue in which they reside.

A newly released study from India wanted to find out if depigmented glabrous skin contained stem cells that could potentially be a source of repigmentation. The authors were quite encouraged when their research identified stem cells “capable of self-renewal and differentiating into melanocytes.”

Although they do not believe current treatments are effective enough to “activate these dermal stem cells differentiation and their migration to the depigmented epidermis,” they are hopeful their findings will lead to new methods of stimulating these cells, further advancing techniques to repigment glabrous skin.
Click here for additional information on stem cells.


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Research & Clinical Trials

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:
[email protected]

IRB approved 10/7/15

Pilot Study in Boston, MA.

Open-label Pilot Study of
Abatacept for the Treatment of Vitiligo

Principal Investigator: Dr. Victor Huang

Study Location:
Brigham and Women’s Hospital Clinical Research Program
221 Longwood Ave. Boston, MA 02115

Abatacept has been shown to decrease T cell activity and reduce symptoms associated with rheumatoid arthritis. Similar pathways have been shown to be involved in vitiligo.

This study is seeking adult patients with active vitiligo to receive 24 weekly self-administered injections of abatacept, to see if the vitiligo lesions stop spreading, and start to repigment.

A 32 week follow-up visit will be performed to evaluate secondary endpoints as well.

Inclusion Criteria:

Must be over the age of 18

Must have actively progressive vitiligo (defined as development of new lesions or worsening of existing lesions within the past 6 months) covering at least 5% of body surface area

Subjects receiving treatment at the time of screening will be eligible providing they undergo a wash out period prior to starting the study

Women of childbearing potential (WOCBP) must be using an acceptable method of contraception throughout the study and for up to 10 weeks after the last dose of study drug, and have a negative serum or urine pregnancy test result (minimum sensitivity 25 IU/L or equivalent units of HCG) within 0 to 48 hours before the first dose of study drug

Sexually active fertile men must use effective birth control if their partners are WOCBP

Exclusion Criteria:

Pregnant or breastfeeding patients

Patients with segmental, acrofacial, or universal vitiligo

Patients with evidence of white hairs within the majority (>50%) of their vitiligo lesions

Patients currently on any other systemic biologic medication, current use of Abatacept, or any other systemic biologic medication within 2 months of study

Use of systemic immunosuppressive agent within 2 weeks prior to initiation of Abatacept
If you are interested in participating or would like more information:
Contact the Study Coordinator:
Hayley Pomeroy at 617-525-6823  or  [email protected]

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


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 - [email protected]


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