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INVESTIGATION

Vitiligo   and emotions

Lucas S.C.   Nogueira^I; Pedro C.Q. Zancanaro^II; Roberto D.   Azambuja^III

^ISpecialist   in Dermatology and General Clinical Medicine. Professor, Universidade Catolica   de Brasilia (UCB) - Brasilia (DF), Brazil. ^II3rd Year Resident Physician, Dermatology Center, Hospital Universitario   de Brasilia (HUB) - Brasilia (DF), Brazil ^IIIDermatologist, Hospital Universitario de Brasilia (HUB) - Brasilia   (DF), Brazil

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ABSTRACT

BACKGROUND:On   average, vitiligo affects one percent of the world population. More than 75%   of the patients have negative self-image on account of the disease. The emotional   impact of the dermatosis is frequently neglected by the caretaker, which has   negative influence on therapy and prognosis. OBJECTIVE:   To check the effect of vitiligo on patients’ emotions and discuss the mind-body   interaction and its impact on the disease. METHODS:   In their first medical visit, one hundred patients with various forms of vitiligo   answered a question about which emotions were elicited by the presence of the   spots. RESULTS: Eighty-eight percent of the patients with spots in exposed areas   complained of unpleasant emotions versus twenty-seven percent of those with   spots in unexposed areas. The most frequently referred emotions were fear, specifically   of expansion of the spots (71%), shame (57%), insecurity (55%), sadness (55%)   and inhibition (53%). CONCLUSIONS:   Chronic illnesses generate in human beings a negative experience propitiated   by the expectation of suffering. Besides appropriate scientific guidance, vitiligo   patients need emotional comfort. Treatment outcomes and patients’ compliance   to it, and even their resilience to face occasional therapeutic failures, rely   on good physician-patient relationship. At a time when doctors make use of reputable   therapeutic resources, it is indispensable that dermatologists become able to   evaluate the patient in an integrative fashion.

Keywords:Emotions;   Physician-patient relations; Vitiligo

INTRODUCTION

Vitiligo is one   of the most intriguing dermatosis. In physical terms, it represents little on   the skin, given that it is characterized by its scarcity of symptoms and it   does not threat patient's integrity. Because of that, unfortunately, many physicians   consider it to be a mere cosmetic affection, neglecting or disregarding the   deep psychological effect it has on patients.

To support the   patient, dermatologists should consider this aspect of the dermatosis and provide   a more humanized perspective of the problem. One wrong word, inappropriate stress   pattern, or misplaced sentence may have disastrous consequences to some subjects,   severely impairing the treatment of the disease.

Statistics about   vitiligo are variable, but it is believed that they may affect on average 1%   of the world population. In general, figures show predominance of female gender,   even though genetic studies do not confirm it ¹.

The diagnosis is   basically clinical. The type of spots, their distribution and absence of pigment   are enough to determine the diagnosis in most cases. Wood's glass examination   is very supportive in doubtful cases, showing sites in which the pigment was   initially lost. Standardized histopathological examination with Hematoxylin-Eosin   (HE) shows that vitiligo impairs the whole melanin unit of the skin, with abnormalities   of melanocytes, keratinocytes and Langerhans cells, confirmed by electron microscopy   ^1,2,3.

The age at onset   of lesions is variable, but it is rarely present at birth. Similarly, it may   be more insidious or take an explosive progression, taking over large areas   of body surfaces within less than 6 months. The basic distribution patterns   are segmental and non-segmental, and the latter is the most known and the main   paradigm of the disease ^1,2,3.

There are different   theories that explain the origin of vitiligo, but none of them can encompass   it all separated. There is the autoimmune theory, the neurogenic theory, the   autotoxic theory, the oxidative stress theory, and still we cannot definitely   determine the cause of vitiligo. Probably, there are different factors combined   together in each patient, which act over a basis and genetic determination.^1,2,3,4,5

Upon assessing   some factors that trigger the disease, we can once again realize that the emotional   factor is very important in the onset of vitiligo. Traumas and burns (including   sun exposure) have an important role in the origin of the problem for many patients,   but in different studies up to 7.2% of the patients reported that the onset   was related with emotional stress. It is not simple to transform this fact into   clinical data, but the correlation made by the patients is highly suggestive.   According to Al Abadie et al., stress increases the level of neuroendocrine   hormones and autonomic neurotransmitters, which modifies the immune system and   activates specific brain regions rich in neuropeptides, modifying their levels   and favoring the antidromic release on skin. It could explain the onset of vitiligo   in these patients ^4,5,6.

Concerning the   influence of stress on the dermatosis, it is likely that it may depend on a   set of beliefs that the person has during life, unconsciously recorded in their   life experience. Beliefs represent the truth to each person, so that different   factors lead to different practical experiences in each person. It happens simultaneously   in all fields of behavior: religious, politics, family, health, work, and others.   We can classify two types of belief system: facilitating and limiting factors.   The first one pushes up and the second one limits the advance of each person.   It is important to point out that these beliefs are not conscious and depend   on the interpretation of life facts individually ^4,7,8.

Therefore, the   created system of beliefs provide tools so that each person can use them to   manage all situations, get encouraged or depressed. It has direct repercussions   on the immune system, as confirmed by many different works in the area of psychoneuroimmunology.   The vision of fear, disgust, cosmetic disadvantage that many patients experience   because of their depigmentation creates a limiting system, which will cause   serious consequences to the treatment outcomes.

A study by Schallreuter   et al. confirmed that vitiligo patients have higher levels of noradrenaline   in the body, and over 75% of them have derogatory self-image concerning the   disease. According to the authors, there would be a correlation between high   catecholamine levels and increase susceptibility to vitiligo and its progression   8. The presence of a neuroimmunocutaneous system defines the communication with   the central nervous system in a chemical basis through the secretion and nervous   endings and cutaneous components. Thoughts are processed at the limbic-hypothalamic   system and transmitted to the skin, similarly to all other organs, through nerves   and blood stream via chemical messengers. This is how the quality of our thoughts   influences the skin, including the melanin unit. ^4,5,6,7,8

For example, it   has been confirmed that the calcitonin gene related peptide (CGRP) has modulating   effect over Langerhans cells. These cells are in constant contact with epidermal   nerves that segregate the peptide. Alpha MSH is also a potent immunomodulator,   inhibitor of IL-1 and 2 and gamma INF production. Under the action of stress,   CGRP inhibits the presentation of antigen to Langerhans cells and alpha-MSH   acts as immunosuppressor ⁸.

Ahmed et al. observed   100 patients with vitiligo and tried to identify the presence of psychiatric   disorders. They found 15 cases of major depressive disorder, 10 cases of generalized   anxiety and other with anxiety/ depression, social phobia, agoraphobia and sexual   dysfunction. They concluded that psychiatric disorders are probably related   with vitiligo, and their frequency is influenced by the situations of the disease   and the life and that major depression and anxiety remain as the most common   psychiatric disorders among these patients ⁹.

The purpose of   the present study was to check the effect of vitiligo on the emotions of patients,   trying to understand how each one experienced the dermatosis. It requires physicians   to have a broader focus, integrating body and mind. Many times, however, they   fail to realize a complete and multidisciplinary approach to the patient because   they ignore psychological aspects of the dermatosis and the person who is there.   ^8,10,11,12

MATERIAL AND   METHODS

The authors have   followed up 100 vitiligo patients with different forms of the disease and used   a questionnaire about their perspective on vitiligo applied in the first visit.   All patients have spontaneously answered the questionnaire and no one refused   to do it. There was no previous guidance not direction of responses. There were   no restrictions concerning educational and social level of patients, which also   applied to age and gender.

Each questionnaire   had one multiple-choice question. We asked the patients "What do you feel when   you look or think about the spots?"

The following options   were given: fear, shame, insecurity, inhibition, disappointment, unhappiness,   bitterness, impatience, sadness, irritation, anger, disgust of oneself, lack   of confidence, negative image before the others. Each patient could freely add   other sensations, as well as deny those unpleasant feelings about the disease.   The responses were marked in an individual form, and later analyzed by a second   researcher.

Patients were subdivided   into two groups: the first one had vitiligo in areas exposed by the clothes   and the second had it only in covered areas. There was also division concerning   age range.

Eighty-five percent   of the patients had depigmentation in exposed areas and 15% in covered areas.

RESULTS

All patients accepted   to answer the questionnaire. Eighty-eight percent of the patients who had spots   in exposed areas manifested psychological complaints, whereas only 27% of those   with spots in non-exposed areas complained of any disturbance. To them, vitiligo   did not affect their social life in an important fashion. To the former group,   the presence of spots caused considerable disturbance in their lives.

In the set of assessed   patients, the most frequent points mentioned were: fear, specifically fear of   dissemination of spots (71%), shame (57%), insecurity (55%), sadness (55%),   inhibition (53%), disappointment (50%), impatience (43%), irritation (36%),   unhappiness (35%), negative image before the others (35%), anger (26%), bitterness   (25%), lack of confidence (25%), disgust of himself (18%), and others (16%).   No patient pointed out any positive aspect concerning the disease, even though   they could have done it (Graph 2).

In the option "other   complaints", two percent of the patients included anger or dissatisfaction with   the physicians, and one of them told the nickname the physician had to the disease   (nem te ligo = play with words with vitiligo, meaning in Portuguese "I don't   care").

DISCUSSION

In the vitiligo   visit, the most significant fact to the patient is not the spots that cause   no physical symptom or damage, but rather the interpretation they have for them.   Vitiligo is devastating to patients and to family members. The most common manifestation   is that the whole family comes to the visit if it is vitiligo in a child, showing   that parents are really anxious. In spite of that, physicians normally pay no   attention to the most severe aspect of vitiligo, focusing on therapeutic procedures   and sometimes even discouraging treatment approaches because the disease is   "only" cosmetic. This is due to the biomedical model in which physicians are   trained, focusing only on the physical structure of the patient and disregarding   anything that cannot be measured, even though it is observed. For this reason,   physicians are not prepared during medical school to get interested by psychological   or emotional aspects of the patients, let alone be trained to provide initial   effective support. It is evident that most articles and books about vitiligo   do not allude to personal life effects and psychological and emotional aspects   of patients, which seems to mean that these elements simple do not exist. Authors   also reinforce the biomedical concept in the mind of those who read them.

Judith Porter et   al., upon investigating personal responses of patients with vitiligo, stated   that most physicians think that vitiligo is a disease of few consequences, because   they simply see the importance of the disease based on the tendency it has to   compromise physical activity or posing a threat to the victim's life. An increasing   amount of sociological and psychological data have shown that cosmetic disfiguration   may have serious consequences on the life of a person or create social embarrassment,   anxiety and shame" ¹³. The same author, when focusing on the effect   of vitiligo on patients' sexual life, noticed that 23% of the 100 interviewed   patients reported that the dermatosis had negatively interfered in their sexual   activity, some because of their own embarrassment, others because of the embarrassment   of the partner ¹⁴.

Psychologist Linda   Papadopoulos has stated that owing to the fact that we do not precisely know   about progression of the presentation and do not know how to prevent the onset   of new spots, the vitiligo patient may spend life with fear that nonspecific   behaviors may lead to onset of new lesions and, thus, social and emotional impact   of this condition is considerable ¹⁵.

It is indisputable   that any perspective of a chronic disease produces negative experiences in human   beings because of the anticipating of suffering, in addition to the doubts about   how this fact will be understood by loved ones and the society in general. Since   the beginning of times, human beings have faced the eminent sensation of change   and some subjects have shown throughout generations that they are more likely   to overcome some difficulties.

Certainly, diseases   such as psoriasis, AIDS, diabetes and vitiligo represent a challenge to the   self-esteem of any subject, but among them all, vitiligo is certainly the most   mysterious one.

Our current time   supervalues esthetics and beauty. The other mentioned diseases may be hidden   or neglected during many phases of life, a fact that can hardly happen with   vitiligo. Such specificity may represent huge difficulties to most people. This   aspect is more evident when we check the great different in perception of the   disease, by comparing groups of patients with disease in exposed areas as opposed   to those that have the disease in hidden areas of the body. Moreover, the sensation   of negative image before other people reaches 35% of the patients in this group,   reinforcing this reasoning. In the studied group, 73% of the patients were affected   by the presence of spots. In this group, the fear that the spots would disseminate   through the body was the predominant emotion, followed by shame, insecurity,   sadness, inhibition and disappointment. It all led to low self-esteem of the   patients. The feeling of conveying a negative image to other people and lack   of self-confidence are other disastrous results that interfere in the performance   of people at work and in social relationships.

Other important   data concern that 85% of the patients presented the disease at an age range   of greater exposure and productivity, between the ages of 20 and 59 years, which   is why it causes severe social, sexual and professional limitations. The catastrophic   impact that such limitations might have on people's psychological development   goes without saying.

Another important   fact, even though not that impacting from a numerical perspective, is the complaints   that patients have against healthcare professionals.

We currently experience   the dictatorship of healthcare plans and high turnover in medical offices, making   medical visits be ruled by the logic of time and objectivity. Unfortunately,   to appropriately manage vitiligo, this structure has to be subverted. In addition   to the correct scientific approach, vitiligo patients need emotional comfort,   which should not be seen as paternalism. The response and compliance to treatment   and even resilience in face of therapeutic failures depend on good physician-patient   relationship.

Dr Porter has reported   that 45% of the patients did not think their physicians were emotionally involved   with their conditions nor attentive to their questions. They did not give satisfactory   answers to their questions about origin of disease, current status of research   studies and relation of vitiligo with cancer; physicians were perceived by them   as distracted or not interested in vitiligo and their effects ¹³.   In good dermatological practice we should no longer accept the use of mocking   expression to try to disregard the importance of the problem to the patient.   It should rather mean what can be done to avoid being bothered by the disease.   What is even worse is to say to patients "there is no cure", which makes patients   hopeless, in addition to being scientifically incorrect. Alternatively, physicians   should have a nourishing attitude with their patients because emotional support   and stimuli are important in treatment compliance and in the favorable reaction   of the body to treatment, plus the prescriptions and reducing stress. It may   contribute to a more favorable reaction of the patient's body. We have observed   that highly stressed patients respond poorly or do no respond at all to therapeutic   approaches. Apparently, the action of stress goes beyond the action of drugs.

CONCLUSION

It is clearly observed   that vitiligo is a dermatosis of great psychological, emotional and social repercussions   to patients. Even though there are no means to confirm the correlation between   hope and positive expectation and favorable response to treatment - which was   not the goal of this study - it is evident that patients with such disposition   have better outcomes in different therapy approaches currently available to   vitiligo. At a time when we have a respectable therapeutic arsenal to treat   the disease, such as UVB phototherapy (narrow band), laser, UVA phototherapy   and psoralenic agents, hypnotherapy in addition to the traditional methods with   brosimum, corticosteroids and others, dermatologists should be apt to have a   holistic understanding of their patients, providing better perspectives of solving   the spot problems and above all, showing interest, stimuli and understanding   in this journey, rather than acting as a cold technician.

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   Mailing Address:   Pedro Zancanaro   SHIS QI 11 - Bloco O - Sala 16ª - Lago Sul   71600 700 Brasília - DF   Tel./fax: (61) 7814-2981   E-mail: zancanaro@unb.br

How to cite this article: Nogueira LSC, Zancanaro   PCQ, Azambuja RD. Vitiligo e emoções. An Bras Dermatol. 2009;84(1):39-43.