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Quality of life in patients with vitiligo
Health and Quality of Life Outcomes volume 1, Article number: 58 (2003)
Vitiligo is an important skin disease having major impact on quality of life of patients, many of whom feel distressed and stigmatized by their condition. Society greets vitiligo patients in much the same way as it does any one else who appears to be different. They are started at or subjected to whispered comments, antagonism, insult or isolation. The chronic nature of disease, long term treatment, lack of uniform effective therapy and unpredictable course of disease is usually very demoralizing for patients suffering from vitiligo. It is important to recognize and deal with psychological components of this disease to improve their quality of life and to obtain a better treatment response.
Last decade has witnessed an increasing interest in psychological effects of various skin diseases and quality of life in patients suffering from these diseases. A healthy normal skin is essential for a person's physical and mental well being. It is an important aspect of their sexual attractiveness, a sense of well being and a sense of self confidence. The skin is the largest and most visible organ of the human body. Hence any blemish on the skin visibly affects the onlooker and thus the person affected profoundly.
Vitiligo is an acquired depigmentation disorder of great concern affecting 1–4% of the world population [1–5]. Since ancient times patients with vitiligo suffered the same mental abuses as lepers. In actual fact vitiligo was referred as Sweta Kustha meaning "White leprosy". Vitiligo is disfiguring in all races but particularly more so in dark skinned people because of strong contrast .
In India and perhaps elsewhere also men, women and children with vitiligo face severe psychological and social problems. It is more acute in the case of young women and children. The first prime minister of India, Pt Jawaharlal Nehru ranked vitiligo as one of three major medical problems of India the other two being leprosy and malaria. In India vitiligo commonly known as leucoderma  is unfortunately associated with some religious beliefs. In some Indian religious texts where reincarnation is believed, it is said that a person who did "Guru Droh" in his previous life suffers from vitiligo in this life. Thus people suffering from vitiligo in India have more social problems than in other countries. This is seriously felt among young unmarried women. This is so because of arranged marriages. Thus an young woman with vitiligo has little chance of getting married. A married women developing vitiligo after marriage shall have marital problems perhaps ending in divorce.
Vitiligo is thus an important skin disease having major impact on the quality of life of patients suffering from vitiligo. Appearance of skin can condition an individual self-image, and any pathological alteration can have psychological consequences . Many vitiligo patients feel distressed and stigmatized by their condition. They attract undue attention from the general public some times whispered comments, antagonism and ostrisisam. The self image of the vitiligo patients drops considerably and may lead to depression. These patients often develop negative feeling about it, which are reinforced by their experiences over a number of years. Most patients of vitiligo report feelings of embarrassment, which can lead to a low self-esteem and social isolation . Vitiligo lesions over face may be particularly embarrassing and the frustration of resistant lesions over exposed part of hands and feet can lead to anger and disillusionment. Particularly in teenagers, mood disturbances including irritability and depression are common. Patients with vitiligo are very sensitive to the way other perceives them and they will often withdraw, because they anticipate being rejected. Sometimes, strangers and even close friends can make extremely hurtful and humiliating comments. The impact of such factors is profound subjecting them to emotional distress, interference with their employment, or use tension-lessoning, oblivion-producing substances such as alcohol . Severe depression has been known to lead to suicide attempts .
Patients with vitiligo often suffer financial loss because they often have to take time off work to attend hospital appointments like PUVA appointment. Vitiligo lesions over exposed sites can adversely affect a person's chances of getting a job at interview and so restrict career choices. Vitiligo beginning in childhood can be associated with significant psychological trauma that may have long lasting effects on the personal self-esteem of these children. Children with vitiligo usually avoid sport or restrict such activities. Children often lose vital days from school. Parents of children with vitiligo may have to take time off their work to regularly accompany them for hospital appointments. Children with vitiligo deal with the disease well or be devastated by it, often depending on the attitude of their parents, siblings, relatives, teachers, friends, baby sitters etc . Vitiligo can also result in problems in interpersonal relations particularly as a result of depression and frustration. Patients often feel that their family members are not supportive or lack understanding. The chronic nature of disease, long term treatment, lack of uniform effective therapy and unpredictable course of disease is usually very demoralizing for patients suffering from vitiligo. Compliance for regular long term visits for PUVA/narrow band UVB therapy, side effects of immunosuppressive therapies, long term risk of photoaging and carcinogenesis with phototherapy are other limitations for vitiligo patients.
Some workers have studied various factors influencing quality of life in patients with vitiligo in past [12, 13]. Porter et al  reported that majority of vitiligo patients experienced anxiety and embarrassment when meeting strangers or beginning a new sexual relationship and many felt that they had been the victims of rude remarks. Salzer and Schallreuter  reported that 75% of vitiligo patients found their disfigurement moderately or severly intolerable. Weiss et al  compared the difficulties faced by vitiligo patients with vitiligo with those with leprosy in India. A possible relationship between stress and the development of vitiligo is under investigation. Al-Abadie et al  indicated that psychological stress increases level of neuroendocrine hormones which affects the immune system and alters the level of neuropeptides. The increase in the level of neuropeptides may be the initiating event in pathogenesis of vitiligo. In a study of 150 vitiligo patients, we assessed the nature and extent of the social and psychological difficulties associated with the disease and their impact on treatment outcome by using Dermatology Life Quality Index [DLQI]. Our results clearly demonstrated that patients with high DLQI scores responded less favourably to a given therapeutic modality thereby suggesting that additional psychological approaches may be particularly helpful in these patients . Papadopoulos et al  have shown that counseling can help to improve body image, self esteem and quality of life of patients with vitiligo, also having positive effect on course of the disease. It is important to recognize and deal with psychological components of this disease to improve their quality of life and to obtain a better treatment response.
To conclude Vitiligo has a profound effect on the quality of life of vitiligo patients and so the patients go to any extent in getting it treated although it is not life threatening. The dermatologists should treat it as serious disease with the various treatment modes now available and not dismiss simply because of not having a completely successful treatment. Improving the physician's interpersonal skills with the vitiligo patients increases patient's satisfaction and consequently may have a positive effect on adherence to treatment protocol and better out come of treatments.
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Parsad, D., Dogra, S. & Kanwar, A.J. Quality of life in patients with vitiligo. Health Qual Life Outcomes 1, 58 (2003). https://doi.org/10.1186/1477-7525-1-58
- Dermatology Life Quality Index
- Vitiligo Patient
- Good Treatment Response