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Nick Montaperto
Ms. Hofmann
English 1102-057
27 March 2014
The Psychosocial Effects of Vitiligo
Note to Reader:
The majority of the revisions I made we based on peer reviewing. There were a few
misspelled words and I needed to change the start of two sentences. I added citations where
needed and responded to a few passages that I quoted from. Overall I believe this paper turned
out very well and I am excited for you to read it.
Hello my name is Nick, and I have Vitiligo. Now I bet that you have no idea what I am
talking about and probably read that funny looking word twice. Vitiligo is a rare disease that
causes the skin to look almost bleached in blotchy patterns. Let me give you some in-depth
information: We all know that our skin is made up of skin cells, but a specific skin cell known as
a Melanocyte gives us the color of our skin. These Melanocytes produce something called
Melanin; Melanin is the specific product that gives the skin its characteristic color. Vitiligo is
caused by the loss of pigment in the skin. Basically this means, the Melanocytes that produce
pigment (Melanin) are killed off by the body for some reason. No one has yet been able to figure
out why the Melanocytes are destroyed. A popular theory is the body's immune system destroys
the cells. But, it could also be a genetic disease or caused by massive amounts of stress (not
likely).
I developed my Vitiligo when I was eight years old after a trip to Aruba. It started off as a
small white dot on my upper left forehead. But as second grade continued, my mother (who also
has Vitiligo) noticed it was spreading. As I have grown older, my Vitiligo has spread far up into
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my hair turning the affected hair white. Going through lower and middle school with a blotchy
looking forehead and white hair presented countless challenges to the young version of me. I
couldnt deal with looking different at the time; I often was teased and noticed people staring at
me. It made me feel weird, like an oddity. But over the past couple of years, I have realized that
my Vitiligo doesnt make me weird, it makes me unique. I couldnt imagine living without it.
These memories along with my obvious connection to Vitiligo made me intensely curious
as the psychosocial effects of Vitiligo; that is, how Vitiligo affects people mentally in the social
setting. Being that I only had my memories and experiences to go off of, I quickly dove into
many studies done in various countries on various age groups. I believe understanding the
psychosocial effects of Vitiligo is a very important issue because many people suffer from the
mental effects of Vitiligo, and not many people know about it.
Vitiligo is a skin disease that affects .5 to 1% of the world-wide population. Because it is
only a disease that alters appearance and doesnt cause any pain or serious medical problems, it
is largely glazed over in the medical field. Dermatologists werent even aware of the
psychosocial effects of Vitiligo until 1970. This means that until 1970, no one in the medical
field had ever thought that people with Vitiligo were adversely affected by it. (Ongenae 3)
Since then, there have been studies done in different countries on different age groups, but it has
not yet received the attention it should.
In 2005, there was a study done in Germany in which, children 24 boys and 50 girls (age
range: 717 years) using the Childrens Dermatology Life Quality Index (CDLQI) and additional
questions. Eighteen children without skin disorders served as age-, sex- and skin color-matched
controls. (Kruger 43) This, as well as most other studies I researched, used a standardized
questionnaire to try to determine just what the people were going through. Not surprisingly to
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me, the study found that, Two-thirds (66.2%) were distressed by their Vitiligo, and 93.2% had
experienced low-key stigmatization, 44.6% nasty comments, and 21.7% bullying. A total of
24.4% had concealed their disease, and 29.7% had avoided situations because of Vitiligo. (43)
The study sheds light on the adverse effects of Vitiligo even in the younger population. Not even
innocent children can escape the stigmatism, teasing, and staring.
This article hit home to me. I suspected I would take a trip down memory lane when I
found the article, but I didnt expect to feel so saddened. This article asked kids very innocent
questions about friendships, family, and social interactions that reminded me of my time as a
child with Vitiligo. This article made me angry as well as sad for these children. Children should
grow up without having to worry about the added burden of appearing different to others. I
believe it is better, however, for a person to develop Vitiligo as a younger, more innocent person.
Speaking out of personal experience, it gave me time to accept and move past my disease. It
would have been especially tough for me as a teenager to go through these changes.
There was a study done on adults in the Netherlands in 2006 about the mental effects of
Vitiligo. This study included 245 adults from varying countries were asked a series of questions
like the children were from the paragraphs above. The study showed that women were generally
more affected by having Vitiligo than men were, if they had it on their chest. It was reported that
women felt ashamed to wear clothes that would reveal the Vitiligo on or around their chest.
(Homan 418) The study also, reported that the location of Vitiligo does not play a critical role in
the overall stigmatization experience. This might seem interesting as it contradicts the
experiences of Women with Vitiligo on their chests. However, I believe that besides this special
case, the location of Vitiligo doesnt play a role in stigmatization experiences. Except for
Women with Vitiligo on their chest, Vitiligo anywhere on the body affects everyone equally.
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(418) Lastly, the questionnaire showed that patients that had tried to seek medical help in the
past generally had a lower quality of life than those patients who never sought treatment. This
makes sense because people that needed to go to such lengths as to seek medical help obviously
have a harder time coping with and accepting their spots.
There was an article written by Dr. K. Ongenae that is an all-inclusive look into the
psychosocial effects of Vitiligo. Very quickly she states, [Vitiligo] may provoke negative
emotions such as shame or embarrassment, anxiety, lack of confidence, and even psychiatric
diseases like depression. (Ongenae1) The beginning half of the article cites as many as 5
studies done that all came to the same conclusions. Almost all people with Vitiligo have dealt
with anxiety, embarrassment, self-consciousness, and depression as a result of Vitiligo. Because
Vitiligo has these effects on people and no one yet knows what causes Vitiligo or how to cure it,
many still have questions. Ongenae states, 45% of patients believed their doctor had not
answered their questions adequately many felt that their physicians were insensitive and
unsupportive. (4) This obvious lack of information further adds to the patients psychological
distress. They want to know what happened to them and how to cure themselves of their skin
disease but no one has been able to give any concrete answers.
The first time I accompanied my mother to a dermatologists office I thought I was going
to get all the answers. I would be able to walk in, have the doctor check my Vitiligo, and I would
be out of there in no time with some sort of remedy to get rid of the spots on my forehead. After
she measured the area of my skin that was effected, she wrote some notes and went back to her
office. Later, she came back and told me that it was indeed Vitiligo and she might have
something to cure it. She gave me a white tube with a bunch of long words on it and told my
mother and I to apply it to our spots to see if it did anything. Well, here I am 10 years later and I
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now have Vitiligo to the very back of the top of my head. It is things like these; lack of
information and experimental creams that can dampen the already wet spirits of people with
Vitiligo. As a 10 year old child, I knew there was probably never going to be a cure, and with the
help of my mother, I accepted that. But, I can imagine as an adult with new Vitiligo, this
realization can be very hard to digest.
In a study done by Dr. Porter in the 1970s, it was confirmed that there were 3 coping
strategies for people with Vitiligo: active mastery, passive acceptance, and poor adjustment.
(3) In the large study, he found that 20% were able to overcome their disease, 40% try to ignore
the problem and get by, and 40% experienced difficulties in coping well with Vitiligo and is
[sic] despressed. (3) In the last group, most took significant actions to try to hide their Vitiligo
and would often avoid social situations. However, it was stated that, over time, some sort of
acceptance would eventually give the patient a greater sense of ease then they initially had.
This statement if very true and both my mother and I went through different phases with
our Vitiligo. I remember as a child, my mother would apply makeup all over her arms to try to
hide her spots on many occasions. Now however, she largely accepts them and has since stopped
using large amounts of makeup and has stopped seeing the dermatologist about it. I on the other
hand had a different struggle. My Vitiligo is largely in my hair, so when I was 12 years old I had
enough. Many nights were spent moaning and being full of self-pitty. Then one day, I decided I
wanted to dye my Vitligo brown to match the rest of my hair. Long story short, we all discovered
that Vitiligo cant be dyed very easily and my Vitiligo hair turned a very light shade of red for 3
days. I quickly realized on my own that the Vitiligo was here to stay and I was able to conquer
my self-consciousness by accepting that I was different.
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However, Vitiligo has different psychological effects on people living in different
cultures. I researched two studies that were done in India that shed light on how their culture
treats those with Vitiligo. In both studies, they found that, in India, women had higher scores
indicating greater distress, an expected finding in our culture. (Guarang 208-209) It is
recognized that in India, Vitiligo often causes social and sexual anxiety, and
rejection/discrimination. In the large study done, it was reported that 65% of people with Vitiligo
felt distressed about their disease. In some Indian religious texts where reincarnation is
believed, it is said that a person who did "Guru Droh" (an evil deed) in his previous life
suffers from Vitiligo in this life. (ncbi.gov) Reading these things made me realize the extent
of how much people with Vitiligo are stigmatized in the Indian culture. It is especially hard
for young unmarried women who often have a hard time finding a husband.
I believe that the psychosocial effects of Vitiligo need to be studied more and the data
needs to be made aware to the public. The findings during my research confirmed what I feared
to be true. People with Vitiligo often feel distressed by their seemingly permanent disease.
Dermatologists, largely, cannot offer help and other people often whisper, point, stare. The
effects of children in Germany, to adults in India all largely seem to be based on the same thing.
They feel different, and they do not like it. I believe support groups like #fearlessspots and
various other Vitiligo groups are very important in todays society.





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Works Cited
Krishna, GS, M Ramam, M Mehta, V Sreenivas, VK Sharma, and S Khandpur. "Vitiligo Impact
Scale: an Instrument to Assess the Psychosocial Burden of Vitiligo." Indian Journal of
Dermatology, Venereology and Leprology. 79.2 (2013). Print.
Krger, Christian, ngela anske, and Karin . challreuter. Disease-related Behavioral
Patterns and Experiences Affect Quality of Life in Children and Adolescents with
Vitiligo." International Journal of Dermatology. 53.1 (2014): 43-50. Print.
Linthorst, Homan M. W, P.I Spuls, Korte J. de, J.D Bos, M.A Sprangers, and der V. J. P. W. van.
"The Burden of Vitiligo: Patient Characteristics Associated with Quality of Life."
Journal of the American Academy of Dermatology. 61.3 (2009): 411-420. Print.
Mattoo, SK, S Handa, I Kaur, N Gupta, and R Malhotra. "Psychiatric Morbidity in Vitiligo:
Prevalence and Correlates in India." Journal of the European Academy of Dermatology
and Venereology. 16.6 (2002): 573-578. Print.
Ongenae, K, L Beelaert, N Geel, and J-M Naeyaert. "Psychosocial Effects of Vitiligo." Journal
of the European Academy of Dermatology and Venereology. 20.1 (2006): 1-8. Print.
Parsad, Davinder, Sunil Dogra, and Amrinder Jit Kanwar. "Abstract." National Center for
Biotechnology Information. U.S. National Library of Medicine, 23 Oct. 2003. Web. 29
Mar. 2014.


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