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International Journal of Women's Dermatology 4 (2018) 32–37

Contents lists available at ScienceDirect

International Journal of Women's Dermatology

Original Research

Vitiligo: Patient stories, self-esteem, and the psychological burden


of disease☆,☆☆
P.E. Grimes, MD a,b,⁎, M.M. Miller, BS c
a
Vitiligo & Pigmentation Institute of Southern California, Los Angeles, CA
b
Division of Dermatology, David Geffen School of Medicine, University of California, Los Angeles, CA
c
Keck School of Medicine, University of Southern California, Los Angeles, CA

a r t i c l e i n f o a b s t r a c t

Article history: Vitiligo is a relatively common disorder that is characterized by depigmented patches of skin. Multiple
Received 4 October 2017 studies characterize the overwhelming psychological burden that is experienced by many patients around
Received in revised form 23 November 2017 the globe. This review examines personal patient stories and the impacts of age, culture, sex, race, and eth-
Accepted 23 November 2017
nicity in relationship to altered self-esteem and quality of life in patients who live with vitiligo.
© 2017 The Authors. Published by Elsevier Inc. on behalf of Women's Dermatologic Society. This is an open
Keywords:
vitiligo
access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
self-esteem
quality of life
pigmentation
stigmatization

Introduction medications, calcineurin inhibitors, and narrowband ultraviolet B


phototherapy (Grimes, 2016b).
Vitiligo is an acquired disorder of pigmentation that is characterized Many global cultures and societies place a profound significance
by depigmented patches of skin due to the loss of melanocytes. on appearance, esthetics, and pigmentation. Any condition that affects
Depigmented patches may appear in a localized or very generalized appearance may be fraught with loss of privilege, opportunities, and
distribution. Vitiligo affects 1 to 2% of the global population with an often upward societal mobility (Grimes, 2008). Given the inherent
equal incidence in male and female patients and in all racial/ethnic visibility of skin disorders, self-esteem is often compromised. The
groups (Grimes, 2016a). Multiple theories have been proposed feeling of being ugly or undesirable has been described in patients
regarding the pathogenesis of this disorder (Harris, 2017). Current with a myriad of cutaneous diseases that range from acne to alopecia
data suggest that vitiligo results from the complex interplay of genet- areata to vitiligo. Skin disorders that negatively alter appearance have
ics, oxidative stress, and autoimmunity (Grimes, 2016a). Recent the potential to affect an individual’s career as well as personal and
studies document the role of CD8 lymphocytes and the interferon-γ social interactions. This effect on self-esteem and perception of beauty
CXCL10 cytokine signaling pathway in mediating the destruction of transcends race, age, sex, and socioeconomic status. Societies that
melanocytes in patients with vitiligo (Harris, 2017). have a cultural preference for specific skin tones often perceive
Therapies for vitiligo address the stabilization of the disease as pigmentation as a passport to society, and perceived defects are
well as the repigmentation of depigmented patches. Therapies that often devastating (Grimes, 2008).
affect disease progression include systemic steroid medications, oral Multiple studies have documented the psychological devastation
mini-pulse corticosteroid therapy, minocycline, and methotrexate. that is inflicted by vitiligo. The seminal study by Porter et al. (1979)
First-line therapies for repigmentation include topical corticosteroid documented the negative impact of vitiligo on patients’ self-esteem.
The authors reported that patients who had lower self-esteem coped
poorly with the disease, but patients with higher self-esteem coped
☆ Sources of support: None. better. Subsequent global studies have consistently reported the
☆☆ Conflicts of interest: The authors have no conflicts of interest to disclose.
negative impact of vitiligo on patients’ self-esteem and quality of life
⁎ Corresponding Author.
E-mail address: pegrimesmd@aol.com (P.E. Grimes). (QoL). Vitiligo causes isolation, stigmatization, loss of self-esteem,

https://doi.org/10.1016/j.ijwd.2017.11.005
2352-6475/© 2017 The Authors. Published by Elsevier Inc. on behalf of Women's Dermatologic Society. This is an open access article under the CC BY-NC-ND license (http://
creativecommons.org/licenses/by-nc-nd/4.0/).
P.E. Grimes, M.M. Miller / International Journal of Women's Dermatology 4 (2018) 32–37 33

depression, and self-consciousness. Herein, we highlight several as an adult. I preemptively warned medical professionals after hearing
patients’ personal experiences in coping with vitiligo and review the the question “Have you been beaten?” too many times.
psychological impact of this traumatic disease. But nothing prepared me for the white patches that suddenly emerged
in my thirties and that now, in my sixties, cover large areas of my body
Patient stories and face. You would be wrong to assume that as a white woman, patches
of nonpigmented skin aren’t noticeable or that they don’t provoke
Subject 1: 13-year-old Hispanic female patient (Skin Type IV) anguish. Perhaps if I were alabaster white, I’d feel differently, but I think
not. To lose color is to be a pale reflection of one’s former self, to lose
I was about 6 years old when I found out I had vitiligo. At first, I didn’t vividness and vitality. Moreover, in my case, vitiligo is likely a result of
know what it was but I quickly learned. When I was growing up, I didn’t my nevus, of my body killing its own melanocytes like Pac-Man scram-
care what I looked like. Then, I switched schools and I didn’t know what bling to kill the ghosts before they kill him. In my twenties, I was told for
kids at school would say or think of me. However, they quickly learned the first time that my nevus could kill me. Vitiligo proves the point.
and they accepted me for me. They don’t care what I look like, which I know that vitiligo is a far greater cosmetic affliction for black and
makes me feel happy. When I’m not at school, I will have my moments brown people. In fact, I feel guilty for complaining or becoming distressed
when I start to cry and tell myself horrible things like “I’m ugly,” “what when people say, “But I can’t see it.” Though often said with good inten-
did I do to deserve this,” and “I’m a horrible person.” I know my family tions, such dismissals compound my distress because they gaslight me
loves me for me, but sometimes it doesn’t feel like enough. Now that and incite guilt. Besides, it is noticeable. Ask the gastrointestinal doctor
I’m entering my teen years, I’ve started to care more about my self- who pointed it out to his students when trying to figure out why I perforat-
appearance and self-esteem. I don’t feel pretty with my spots. Sometimes ed my colon. Ask the cosmetician trying to sell me foundation not knowing
I wish I could go back to my younger self [who] didn’t care. I look at which skin color she should match. I’m brave. I act like it’s nothing, just as I
pictures of myself without spots and say to myself, “Wow, I didn’t learned to do with my nevus. Then I go home. And then I cry.
remember what certain parts of my body looked like and now they People with skin conditions and perhaps other autoimmune disorders
look very different.” I know my teen years will be very different and I often feel tremendous guilt. Have we caused our lesions because our
will need to turn to my family and friends for support. emotions are intense, because we’re angry, because we can’t handle the
normal stresses of life? Has it spread because we don’t meditate or do
yoga or eat enough kale? John Updike called psoriasis, a condition he
Subject 2: 50-year-old African-American male patient (Skin Type VI) hid for much of his life, a dermal sin to which he had to confess. Never
mind that we control very little in our lives, our culture demands, indeed,
I knew it was going to be a problem when I just finished lunch with a runs on the illusion that we have control if only we would seize it.
friend and she said, “You have something on the side of your mouth.” Incurable and unpredictable, vitiligo could not have provided a more
I was working at WABC TV in New York City as the entertainment perfect spur to the anxiety and depressive disorders I’ve had to manage
reporter. I had gone to the MTV Awards. I saw Michael Jackson’s perfor- since childhood. My clothes can no longer hide my skin disease. My
mance on stage. Earlier in the week, I interviewed Whoopi Goldberg for a skin has become a living metaphor.
reprise of a one-woman show. I was 26, in the biggest city, at the biggest But meet me on the street tomorrow and you’ll never know that I’m
station, and on the top-rated newscast. AND THERE WASN’T ANY FOOD hopeless or hiding. Be a fly on the wall in my wonderful dermatologist’s
ON MY MOUTH! It was my skin. office and you’ll hear me tearfully confess my dermal sins and, perhaps,
I had been able to cover the small spots on my hands and scalp… and decide to begin treatment anew. Because when your doctor has a great,
the one small spot just under my nose. But after eating, the corners of my big soul, you too might say to yourself, why not? Why not keep trying?
mouth could not be hidden. I thought the life I had created was over. I These stories are profound personal narratives of stigmatization,
didn’t know how to react. And with time it got much worse. My Emmy loss of self-esteem, emotional traumas, grief experiences, and coping
Award winning face was gone. I was a splotchy mix of black and white. strategies. They reflect and provide a cross-cultural, multi-ethnic, age,
And I went through some stages: grief, fear, grief, anger, grief, and accep- and sex perspective of the burden of disease (Figs. 1, 2, and 3).
tance. And let me be clear. IT’S BEEN YEARS… of questioning, emotional
struggle, and crazy looks but the truth is a little shocking. This disease has Impact of sex, culture, and race/ethnicity
become my blessing.
My name is LT, and I am an entertainment reporter/host in Detroit. I The impact of vitiligo on patients’ QoL has been assessed in global
travel the world covering entertainment. I am also thankful to be an populations, and the outcomes vary. However, most results substan-
advocate for people like me. And I don’t just mean people whose skin tiate the negative impact of the disease on patients’ QoL (Table 1; Bae
changes so drastically people question if they should shake your hand et al., 2017; Belhadjali et al., 2007; Bhandarkar and Kundu, 2012;
or hug you. I mean people who are struggling to exist comfortably and Borimnejad et al., 2006; Boza et al., 2016; Chan et al., 2013; Elbuluk
lovingly in their own bodies. and Ezzedine, 2017; Ezzedine et al., 2015, 2015; Ingordo et al.,
Vitiligo can be a challenge but I have found support and guidance 2014; Kiprono et al., 2013; Komen et al., 2015; Ongenae et al., 2005;
leading to pride for my skin. I have created a life of my own definition. Parsad et al., 2003; Radtke et al., 2009; Silverberg and Silverberg,
And now, I can’t imagine my journey any other way. I have become a 2013; Talsania et al., 2010; Teovska Mitrevska et al., 2012).
more loving and compassionate man. I am embracing the stares and In a large study of 1541 patients, the authors evaluated the associa-
directing the attention, when appropriate, to positive ends. tions among vitiligo extent, distribution of disease, and QoL impair-
How do I live with vitiligo? I LIVE! Oh, and by the way, I have vitiligo. ment. Vitiligo had indeed a negative impact on total Dermatology Life
Quality Index (DLQI) scores. Scores were significantly associated with
Subject 3: 62-year-old Caucasian female patient (Skin Type II) an affected body surface area (BSA) of greater than 25% and body
parts affected (Silverberg and Silverberg, 2013). Eighteen percent of
Born with a bathing trunk melanocytic nevus, all my life I’ve been patients reported sexual dysfunction, with equal frequency in male
self-conscious about my skin. Finding a one-piece bathing suit to cover and female patients, which correlated with the presence of genitalia le-
my flank, back, and right upper thigh wasn’t possible, but I imagined sions. In contrast, other studies have reported greater sexual dysfunc-
that the patches of brown that peeked out didn’t show. No such luck in tion in female patients compared with male patients (Borimnejad
locker rooms where, fully naked, I heard taunting as a child and gasps et al., 2006). In an Italian population of 161 patients, although vitiligo
34 P.E. Grimes, M.M. Miller / International Journal of Women's Dermatology 4 (2018) 32–37

Fig. 3. Severe depigmented patches on the trunk of a 9-year-old Caucasian female


Fig. 1. Depigmented patches on the trunk and axillary region of a 52-year-old African- patient
American female patient

had only a mild impact on QoL, DLQI was significantly associated with study by Porter et al. (1986), self-esteem measures did not differ. In
female sex and facial involvement at the time of the onset of the contrast, Ongenae et al. (2005) reported that although women with
disease. vitiligo and psoriasis had comparable scores, men with vitiligo had
Several studies have compared the QoL of patients with vitiligo to significantly lower DLQI scores compared with men with psoriasis,
that of patients with other chronic dermatological diseases such as which again indicates a sex divide in coping with the disease.
psoriasis. Porter et al. (1986) and Ongenae et al. (2005) both reported Myriad authors have reported a relationship between culture and
higher DLQI scores in patients with psoriasis overall. However, in the the psychological burden of vitiligo. Historically, patients in India
experience psychological trauma and stigmatization. In the Indian
book Rigveda, a person who suffers from Switra (vitiligo) and the
person’s progeny are disqualified from marrying (Elbuluk and
Ezzedine, 2017; Ezzedine et al., 2015, 2015). The psychological burden
of the disease is profound for young, unmarried women. Given the
systems of arranged marriages, vitiligo lessens the possibilities for mar-
riage. Moreover, in married women who develop vitiligo, the disease
increases the possibility of divorce. Finally, patients in India with high
DLQI scores did not respond as well to therapies for repigmentation,
which suggests that psychological intervention should be included in
the hierarchy of therapies for vitiligo (Parsad et al., 2003).
Thompson et al. (2010) interviewed seven South Asian women
who lived in the United Kingdom and analyzed their data with a
qualitative method of template analysis. All women experienced
stigmatization, which was often associated with cultural values that
are related to appearance and myths of vitiligo. One woman stated,
“My grandma (in Pakistan) was like, ‘Oh you can’t take her with
you (to visit friends and family) because of her skin, what will other
people say?’”
The assumption is often made that the psychological burden of
vitiligo is greater in racial/ethnic groups with darker skin. A recent
survey stratified 300 patients by skin phototype, including 234 pa-
tients with fair skin and 66 patients with dark skin. The patients
with darker phototypes were of Caribbean, South Indian, or Middle
Eastern ancestry. Even though the dark skin phototypes perceived a
significantly greater difference in the burden of vitiligo on daily life,
overall self-perceived stress that was associated with vitiligo was
Fig. 2. Extensive depigmented patches on the back of a 48-year-old Hispanic female similar regardless of the skin type (Ezzedine et al., 2015, 2015). In
patient contrast, Porter and Beuf (1991) studied vitiligo in 158 patients and
P.E. Grimes, M.M. Miller / International Journal of Women's Dermatology 4 (2018) 32–37 35

Table 1
Review of various studies in the literature that chronicle the extent vitiligo on QoL in different countries and patient populations

Title of study Country Number of subjects Skin phototype DLQI score (SD) Comments

Living with vitiligo, results form a France 300 (216 F, 82 M) Fair (n = 234)*; Dark Fair: 8.3 (6.2); Patients with darker skin type reported
national survey indicate differences (n = 66)** *Fitzpatrick Dark: 10.1 (6.1) statistically significant (p = 0.049)
between skin and phototypes (2015) I-III, **Fitzpatrick IV-VI higher DLQI scores
Investigating factors associated with Singapore 222 (115 F, 105 M) Not assessed 4.0 (4.4) Female patients reported statistically
depression of vitiligo patients in significantly higher DLQI scores, 4.8
Singapore (2013) (5.1) vs. 3.2 (3.2), respectively.
Quality of life in family members of Saudi Arabia 148 (72 F, 69 M) Not assessed 9.0 (6.5) Family DLQI was measured and found
vitiligo patients: A questionnaire study to be 10.3.
in Saudi Arabia (2013)
To what extent is quality of life impaired Italy 161 Not assessed 4.3 (4.9) More severe QoL impairment was
in Vitiligo? A multicenter study on associated with the female sex.
Italian Patients using the DLQI (2014)
Association between vitiligo extent and United States of 1541 (1080 F, 433 M) Not assessed 5.9 (5.5) Affected BSA N 25% was correlated
distribution and quality of life America with significant QoL impairment.
impairment (2013)
Factors affecting the quality of life in Korea 1123 (514 F, 609 M) Not assessed DLQI not used Skindex-29 used as a QoL
patients with vitiligo: A nationwide measurement. Larger BSA involvement,
study. (2017) involvement of visible body parts and
higher educational level were all
associated with larger QoL impairment.
Quality of life impairment in children and Brazil 117 (75 F, 42 M) Not assessed 3 Women had statistically higher DLQI
adults with vitiligo: A cross-sectional scores than men (3.0 vs. 2.0,
study based on dermatology-specific respectively).
and disease-specific quality of life
instruments. (2017)
Quality of life with vitiligo: Comparison Iran 77 (53 F, 24 M) Not assessed DLQI not used Modified DLQI used, women with
of male and female Muslim patients in vitiligo experienced significantly
Iran. (2006) lower QoL compared with men.
Dermatology Life Quality Index score in India 150 (83 F, 67 M) Not assessed 10.7 (4.6) No statistical significant difference in
vitiligo and its impact on the treatment DLQI scores related to sex. Age of
outcome. (2003) vitiligo subjects and DLQI scores were
correlated.
Quality of life of patients with vitiligo Tanzania 88 (52 F, 36 M) Not assessed 7.2 (4.8) Female sex, BSA affected and previous
attending the Regional Dermatology treatments were statistically
Training Center in Northern Tanzania. significantly associated with higher
(2013) DLQI scores.
Willingness-to-pay and quality of life in Germany 1023 (731 F, 292 M) Not assessed 7.0 (5.9) Female patients experienced higher
patients with vitiligo. (2014) DLQI scores (7.0) versus male patients
(5.5).
Vitiligo and quality of life: A case control Tunisia 60 (30 F, 30 M) Not assessed 9.4 (4.1) Quality of life was significantly more
study. (2007) impaired in female patients and in
cases with more than 10% BSA
involvement.
Vitiligo is more than skin deep: A survey of United Kingdom 520 (354 F, 166 M) Not assessed DLQI not used Participants could classify their vitiligo as
members of the Vitiligo Society. (2010) having a major, moderate, minor, or
trivial effect on their QoL. A total of 86
patients (16.6%) rated the QoL effect as
major, 206 patients (40.2%) as moderate,
152 patients (29.7%) as minor, and 50
patients (9.8%) trivial.

BSA, body surface area; DLQI, Dermatology Life Quality Index; F, female; M, male; QoL, quality of life; SD, standard deviation

found no differences in the degree of disturbance of vitiligo in even stigmatization that this could be related to a sexually transmitted
African-American and Caucasian patients. Even though both groups disease. Genital involvement and generalized vitiligo are significant
were affected negatively by the disease, self-esteem and perceived risk factors that affect patients’ sexual lives (Cupertino et al., 2017). In
stigmatization of vitiligo were similar. These findings raised the a study of 167 patients, 14% had vitiligo patches in their genital area;
possibility of different support networks and resources that may of those, 21.6% reported that vitiligo negatively affected their sexual
affect African-American patients’ coping skills for vitiligo (Porter relationships (Kim et al., 2013). Talsania et al. (2010) found that 56%
and Beuf, 1991). of survey respondents reported genitalia involvement, which is a
much higher number than previously reported. The authors also
Anatomic involvement found that 76% of survey respondents had facial involvement and
considered this to be more disfiguring, with 56.6% of respondents
As noted, studies have reported that a greater extent of BSA classifying the effect on their QoL as moderate to severe.
involvement has a correlation with a more severe impact on patients’
QoL (Silverberg and Silverberg, 2013). In addition, multiple studies Impact on children
have found that lesions that affect more visibly prominent areas
such as the face and hands and more sensitive areas such as the Children comprise 25 to 38% of patients with vitiligo (Grimes,
genitalia have a more severe impact on patients’ QoL. 2016a). Several studies have addressed QoL impairment in children
Patients with involvement in unexposed genital areas often do not with vitiligo. Boza et al. (2016) assessed QoL in a series of adults
report these lesions to healthcare providers out of embarrassment or with the Vitiligo Quality of Life Assessment (VitiQol) and the DLQI
36 P.E. Grimes, M.M. Miller / International Journal of Women's Dermatology 4 (2018) 32–37

and in pediatric patients using the Children’s Dermatology Life only 9% of clinical trials had assessed QoL outcomes. The authors
Quality Index (CDLQI) and found a significant correlation between proposed that future clinical trials address the following items in
age and CDLQI score in children. In another study, the QoL of 50 addition to repigmentation: cosmetic acceptability of results, global
children with vitiligo was compared with 50 children with atopic assessment of the disease, QoL and maintenance of repigmentation,
dermatitis and healthy controls who were matched for age and sex. stabilization of disease, and medication side effects (Eleftheriadou
Patients with vitiligo had significantly higher CDLQI scores compared et al., 2012).
with healthy controls. CDLQI scores were also significantly increased There is indeed a dearth of literature that addresses the need for a
compared with those of patients with atopic dermatitis except in the spectrum of intervention approaches to improve the psychological
parameters of pruritus and sleep (Dertlioğlu et al., 2013). burden of vitiligo. In a study of 53 patients in India, major depressive
QoL assessed by the CDLQI was examined in 24 boys and 50 girls disorder was reported in 57% of patients, social phobia in 68%, and
with matched controls for sex and skin type. Even though the QoL suicidal ideation in 28% (high risk 8%; low risk 21%). These findings
in the patients with vitiligo was not significantly impaired, they stress the need for psychological and/or psychiatric intervention
reported a spectrum of negative experiences. Sixty-six percent of (Ramakrishna and Rajni, 2014). Papadopoulos et al. (Papadopoulos
patients were distressed by their disease, and 92% had experienced et al., 1999) reported that counseling and cognitive behavioral therapy
low-key stigmatization (Krüger et al., 2014). could improve self-esteem, body image, and overall QoL in patients
Silverberg and Silverberg (2013) performed an online, parental, with vitiligo.
questionnaire-based study of 350 children ages 0 to 17 years using Cosmetic camouflage was recently shown to improve the QoL of
the CDLQI and showed that vitiligo negatively affected CDLQI scores. children with skin disorders. Twenty-two children with different cuta-
The most bothersome sites for children and their parents were the neous disorders were studied, of whom eight had vitiligo. The authors
face and legs. A BSA greater than 25% was associated with self- found that there was a statically significant reduction in CDLQI and
consciousness, fear, and bullying. Teenagers ages 15 to 17 years FDLQI scores with cosmetic camouflage (Salsberg et al., 2016).
experienced the most self-consciousness of all pediatric age groups
(Silverberg and Silverberg, 2013). Another study reported that, in
Conclusions
general, social and psychosocial development and general health-
related QoL in young adult patients with childhood vitiligo were not
Vitiligo is one of the most psychologically devastating diseases in
different from those of healthy controls. However, patients who
dermatology because of the global paradigm of pigmentation as a pass-
reported negative childhood experiences had significantly more
port to society in many cultures. Although the contrast of depigmented
problems in social development as adults compared with those
patches is most visible in racial/ethnic groups with darker skin, all pa-
with positive experiences (Linthorst Homan et al., 2008).
tients with vitiligo experience some degree of emotional devastation
As with adults, these studies suggest that children experience
that is caused by the disease. Physicians must have a heightened
substantial trauma related to vitiligo.
awareness of the impact of vitiligo on self-esteem and QoL. Such
awareness and vigilance as clinicians in monitoring and addressing
Effects of disease on family members
the mental health needs of patients with vitiligo is crucial to optimize
patient care. Interventions should address dispelling myths that sur-
Several studies have assessed the QoL of family members of pa-
round vitiligo, including the notion that vitiligo is a cosmetic disease,
tients with vitiligo. One report in the literature studied 50 families of
while offering or providing optimal therapies for repigmentation.
children with vitiligo and 50 families of healthy children. The
psychological impact of the disease on parents was measured using
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