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Vitiligo Support International
Lynchburg Va 24503
From the Executive Director
Dear Members and
Friends of VSI,
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
passionate physicians, who care deeply not only about their
own vitiligo patients, but are personally committed to a better future
for us all.
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
We, as patients,
have now been recognized as an
in this process. Does that mean the battle is over?
It means we have been given a seat at the
table. What we do with that seat now rests on your shoulders.
current level of vitiligo research
Are you content
with current vitiligo treatment options?
with the medical profession dismissing the emotional and
psychological impact of vitiligo?
then we ask
for your support in this effort.
the great Mahatma Gandhi once said:
must be the change you wish to see in the world.”
rely on the support of a few,
but we need the
a Supporting Member: Click Here
a General Donation Through VSI: Click Here
a General Donation with PayPal
below taken during 2013 Miami vitiligo meetings.
Director Jackie Gardner addresses the group.
impact of vitiligo on the lives of those affected.
Iltefat Hamzavi of the Henry Ford Hospital in Detroit MI
us today to let us
know you dropped by!
has vitiligo affected your life?
anyone ever told you not to worry about your vitiligo,
don't even notice it
as though that will suddenly make
all about it?
you ever been denied insurance coverage of a vitiligo
treatment because the insurance company claims vitiligo is
only a "cosmetic" problem and not worthy of being
VSI gather information that will help the rest of the world
understand the true impact vitiligo has on the lives of
Click Here To
your newsletter look
U N K Y?
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the end of the newsletter?
you click a link then close it-
your entire newsletter close?
is fighting with the layout!
correct this problem:
to read the web version!!!
Type of Vitiligo Do You Have?
What Are the Clues; Why Does it
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.
proteins used by the immune system to find and
foreign 'invaders' in the body such as
bacteria, viruses and parasites.
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
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.
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.
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
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.
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.
Major Types of Vitiligo
(SV), Non-segmental (NSV), and Mixed
starts and stays on one side of the body, rarely
associated with autoimmune disease.
includes all types except SV, is an autoimmune
disease, and often mirrors on both sides of the
overlap of both types in the infrequent cases
where SV becomes NSV
(Childhood) Vitiligo: A Possible New Type
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
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
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.
onset vitiligo - also known as
vitiligo and pre-pubertal onset
Vitiligo developing before the age of 12 years.
vitiligo - also known as adult-onset
that develops at age 12 or older.
of Early-Onset/Childhood Vitiligo
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
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.
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
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.
autoantibodies (also known as anti-thyroid
antibodies, thyroid peroxidase antibody,
anti-thyroid peroxidase antibody, anti-TPO, and
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
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.
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:
presents on different sites of the body than
prevalence of allergic diseases
frequency of thyroid disease
disease was associated with duration of vitiligo and
history of thyroid disease, and
not with female gender, as in later-onset vitiligo
slower rate of progression overall, as it includes
more cases of
segmental vitiligo, which is less
reports of emotional stress at onset of disease
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.
any substance provoking the production of antibodies as
an immune response.
- 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.
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
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?
for inflammation and autoimmunity have been identified as being
associated with NSV.
for Non-Segmental vitiligo
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.
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.
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.
Use of statistical methods to
analyze the results
from several independent studies
Does This All Mean for the Vitiligo Patient, VSI and Researchers?
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
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.
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
(Back to Top)
New Vitiligo Treatment
Trial Stalled Due to Lack of Volunteers
past two newsletters, VSI has featured a vitiligo clinical trial
for the drug
simvastatin that is recruiting volunteers. Because
is already on
the market, if found safe and effective as a
it could be
prescribed right away.
contacted Dr. Harris about the progress of this
trial, and obtained the following
have enrolled and completed 11 subjects but need 14 more. The
investigational drug has generally been well tolerated in our
without a sufficient number of participants, we may
to make conclusions about whether or not it will be
effective for vitiligo."
Why weren't women included in this clinical trial?
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.
: 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
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
"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
Click here for
more information on this
Sunscreen Labeling to Take Effect
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.
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
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
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.
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.
of sunscreen ingredients
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.
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.
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.
(Back to Top)
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
Crosslake, MN – ages 10-14 – June 23-28
Reflection, Carnation, WA – ages 8-16 – June 24-28
Crosslake, MN – ages 14-16 – July 7-12
Horizon, Millville, PA – ages 8-13 – August 10-17
Dermadillo, Burton, TX – ages 9-15, August 11-16
Liberty, Hebron, CT – ages 8-16, August 11-17
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]
read a firsthand report from a VSI member
attended Camp Discovery: Click Here
On Your Mind?
Is Vitiligo Contagious?
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.
reading the vitamin D update in the last newsletter, I was
wondering if NB-UVB affects vitamin D levels like sunlight
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.
Back to Top
of recently-published medical
vitiligo and its treatments
Modify a Protein that Returns
Pigment to Mice with Vitiligo
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
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.
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.
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
In the best case scenario with no problems, how long
might it be before this drug would be ready for clinical
trials in humans?
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
If clinical trials prove this drug to be a safe and
effective vitiligo treatment, how often might the
treatment need to be repeated?
will not know the types of effects
of the drug for humans until it has
been tested in human
D supplement with large meal promotes absorption
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.
factors trigger onset of
vitiligo for some vitiligo patients
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
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.
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
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
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.
vitiligo patients found to
have greater risk of allergic
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.
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.
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.
more information on how and when to take vitamins and
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& Clinical Trials
Trial in Massachusetts!
phase-II, randomized, placebo-controlled trial
of simvastatin in
Investigator: John E. Harris, MD, PhD
UMass Memorial Medical Center in
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
be eligible if you are a patient with vitiligo
male between 18 – 64 years of age
currently taking a statin medication for heart
you are interested in participating or would like more
Expansion of Vitiligo Genetics Project
Health School of Medicine
Study to Find Vitiligo Genes
Patient Volunteers Needed
the USA and Canada
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.
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
new goal is to enroll 3000 additional
Caucasian (white) vitiligo patients over
the next two years. Your help is
you are from the USA or Canada
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.
personal information, by law,
be kept private and will not be
sold or disclosed
with us to work for a vitiligo-free
and Controls Invited to
in Online Vitiligo Survey
by Nanette B. Silverberg, MD
St. Luke's-Roosevelt and Beth
Israel Medical Centers, New York, NY
Silverberg is conducting a survey to review medical,
psychological and nutritional factors
that may cause or exacerbate vitiligo.
with vitiligo that have been previously
by a physician are welcome to
contribute to this survey.
and family without vitiligo
are also encouraged to
respond as control
subjects. Just answer the questions that are
survey will not include any personal information
identify you to the public.
Link to Select the Appropriate Survey Below
Funding for VSI 3 Ways When You Shop!
keep VSI in mind when you do any of your online shopping
has all kinds of
items in addition to books. As long as shopping is
done through this link,
, or from the Amazon box on
, VSI will earn fees, based
on a percentage of the sale*. The more items members
buy, the higher the percentage! Our
Library and Store
, containing books,
articles and products for those with
vitiligo, is also powered by Amazon.
is another program with an online shopping mall
with over 700 stores where you can shop and earn VSI a
percentage. Let friends and family know about iGive so
they can support VSI, too. You do have to
. Once you've registered, you
can either shop directly through their "mall"
on iGive's website or by downloading their new
button, which makes it even easier. iGive also has
a search function powered by Yahoo at
(or through the
button) that earns VSI a penny per search. The
power of numbers makes this also an effective way to
are similar to iGive. Goodshop has some different stores
(like Target), though, and also offers coupons and often
a higher percentage to VSI. Goodsearch also offers a
toolbar. Through another affiliate, GoodDining,
participating restaurants offer VSI a percentage of your
meal purchases. If you provide reviews of the
restaurants afterwards, we earn even more!
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
Vitiligo Education and Stay
is no other source available that offers the
comprehensive vitiligo education and patient
support that VSI does. We are asked to respond
in many ways to those who come to us for
guidance, information and support. As we depend
on donations from the public to meet these
demands, your gift is critically needed.
a Supporting Member: Click Here
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