|Year : 2022 | Volume
| Issue : 2 | Page : 67-69
Cover till you recover: breaking the stigma of pigmentary diseases in India
Namrata Singh, Tarun Narang
Department of Dermatology, Postgraduate Institute of Medical Education and Research, Chandigarh, India
|Date of Submission||23-Aug-2021|
|Date of Acceptance||25-Aug-2021|
|Date of Web Publication||12-Aug-2022|
Dr. Tarun Narang
Department of Dermatology, Postgraduate Institute of Medical Education and Research, Chandigarh, Pincode 160012
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Singh N, Narang T. Cover till you recover: breaking the stigma of pigmentary diseases in India. Pigment Int 2022;9:67-9
| Introduction|| |
India is a land of great diversity in landscape, climate, ethnicity, and sociocultural beliefs, and this versatility accounts for various skin tones, types, as well as pigmentary skin diseases.
As melasma, lichen planus pigmentosus (LPP), postinflammatory hyperpigmentation (PIH), Riehl melanosis, pigmentary demarcation lines and idiopathic guttate, and confluent hypermelanosis contribute as most common hyperpigmentary skin diseases in India; the most common hypopigmentary diseases include vitiligo, pityriasis versicolor, nevus achromicus, and albinism. Most of these diseases unfortunately are autoimmune or idiopathic in etiology, thus largely nonpreventable and chronic in nature; leading to significant psychologic stress and poor quality of life (QOL) in the long-term.
Pigmentary changes of skin are most easily noticeable, much to the chagrin of the patients. To add to the misery is the financial strain of treatment for these chronic diseases and social stigmatization leading to the embarrassment of being “struck by the tragedy of a pigmentary skin disease.” The problem becomes even more relevant in the present social media-obsessed age, where everyone wants to look desirable and attractive to even unknown people!
The Indian scenario
Indian society is crippled with cultural beliefs beyond logic and social discrimination beyond one’s imagination. Skin color has always been a relevant topic in all sections of Indian society. The obsession for fairer skin can be observed in their preference for matrimonial alliances, employing for customer-facing jobs, modeling, acting career, etc. The relentless desire to look fairer than their natural skin tone can be gauged from the fact that the Indian skin fairness formulations market stands at a whooping 5000-crore business currently and pins down on the Indian mindset of “Fair and Lovely” and “Fair and Handsome,” making people “uncomfortable in their own skin.”
A recent Indian study found that almost 11% to 27% of patients of pigmentary diseases such as vitiligo, acquired dermal macular hyperpigmentation and melasma suffer from psychiatric issues such as anxiety, depression, and somatoform disorders.
As dermatologists, we often fail to actively enquire about the psychologic state and coping mechanism of our patients, largely due to busy out-patient departments, time constraint, and communication barriers. Besides, most of the patients in rural India do not have access to a dermatologist, thus have to travel long distances to meet them, sacrificing their daily wages. The unaffordability of regular treatments and follow-ups often makes them fall prey to quacks or faith-healers such as babas and fakirs; or resort to culture-based home remedies to get instant cure from their “curse.” This is far from helping them, adds to their disease stigmatization, and often backfires in the form of allergic reactions.
Indian stance on specific pigmentary skin diseases
Vitiligo is one of the oldest recognized skin diseases with a prevalence of 0.25% to 8.8% in India. It differs from other pigmentary diseases in certain aspects such as a relatively early age of onset, the deep-rooted, bizarre superstitions, and sociocultural stigmatization of the disease (vitiligo is considered contagious or white leprosy, a wrath of gods when sinned against the Sun, a reaction when a sea-food diet is mixed with milk and dairy, etc.)
This can cause significant social distress and emotional lability especially to young patients who are overly conscious of their body image. Patients with vitiligo are constantly plagued with multiple concerns such as their physical appearance, social and dietary restrictions, job and marriage hurdles, etc., which can lead to depression, anxiety, and even suicide ideation.
In a recent study, the willingness to pay was evaluated as an indirect indicator of the psychologic burden, and it was found that patients with vitiligo had highest willingness to pay for treatment of their disease; sometimes beyond their affordability. This directly reflects the impact of the disease on a patient’s QOL. Although various social organizations and campaigns are trying to reduce vitiligo stigmatization, we still have a long way ahead to a vitiligo–stigma-free society [Figure 1].
Melasma is another widely prevalent pigmentary skin disease in India, probably owing to our genetic propensity, long outdoor exposure without optimal sun protection and multiple pregnancies. An Indian study found that almost 37% to 49% of patients with melasma felt depressed, frustrated, and overly worried about their appearance. Often in despair, many melasma patients resort to overuse and abuse of dubious fairness products and topical steroids (easily procured over the counter in India), which ultimately lands them with topical steroid-dependent face, further adding to their anguish.
The LPP is also a common and easily noticeable skin disease, presenting with slate-gray to brown-black mottled pigmentation and peaks at 20 to 39 years of age. The cultural practices in India to apply henna, amla oil, or mustard oil on scalp are some of the suspected etiologic factors. In a recent Indian study, patients of LPP were found to have a significantly impaired QOL similar to vitiligo and significantly greater than melasma.
Other acquired hyperpigmented skin diseases such as Riehl melanosis, erythema dyschromicum perstans, and ashy dermatosis, etc. are also common in Indian skin. Some possible causes include increased propensity of Indian skin to develop PIH, unsupervised chronic use of questionable “fairness creams,” ritualistic use of kumkum, bindi, or sandalwood paste on forehead (can lead to pigmented contact dermatitis), etc.
The poor quality of life is multifactorial
It is important to understand that the psychologic impact of a skin disease is multifactorial and may not always correlate with disease severity. The contributory roles of family, friends, financial status, and inherent personality attributes in the patient’s psychologic adaptiveness and QOL cannot be ignored. The “greater patient concept” proposed by Basra and Finlay, brought into limelight the psychologic challenges faced by families and caregivers of patients with skin diseases. The financial burden of care, social embarrassment, incessant worrying about jobs or marriage obstacles, spouses feeling “unattracted” toward their partners with pigmentary disease, etc. can wreak havoc in families. The lack of support or negative psychologic state of caregivers directly mirrors on the patient’s psychology and disease coping tactics; hence, it is important to counsel and destigmatize the caregivers of these patients.
Furthermore, seeking psychiatric help is also tabooed in India and patients often refuse psychiatric referrals, which amounts to a large proportion of undiagnosed and unattended psychiatric issues in pigmentary skin diseases. In such situations, the onus of screening, counseling, and lending support to these patients lies with the treating dermatologist.
This discrimination and stigmatization of pigmentary skin diseases in India is age-old, yet largely ignored. The vision of holistic patient management in today’s world should emphasize on psychologic aspect of patient care to reduce the disease burden. We need to develop toolkits to reduce the stigma and strengthen the disease coping mechanisms of patients and their caregivers. Using questionnaire-based psychologic assessment, spending extra time on assessing their global well-being, demystifying doubts or superstitions about these diseases, extending support to safe use of camouflage products (which can greatly help in improving appearance and thus patient’s self-confidence), and setting up psychodermatology clinics to treat such patients can go a long way in improving their QOL, treatment adherence, and efficacy.
Finally, as most of the pigmentary skin diseases are chronic yet innocuous, patients should be entitled for choosing to be treated and their choice of treatment.
We, as dermatologists, can play a key role in destigmatizing the pigmentary disorders by educating the patients, their family members as well as the society and see that the and making India an open-minded society, where patients are not forced to seek treatment for their pigmentary skin diseases due to societal ostracization but only on their personal will. In addition, an asymptomatic patient with a nonprogressive pigmentary disease is able to live an unhindered, normal, and productive social life.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Shenoi SD, Prabhu S. Role of cultural factors in the biopsychosocial model of psychosomatic skin diseases: an Indian perspective. Clin Dermatol 2013;31:62-5.
Dabas G, Vinay K, Parsad D, Kumar A, Kumaran MS. Psychological disturbances in patients with pigmentary disorders: a cross-sectional study. J Eur Acad Dermatol Venereol 2020;34:392-9.
Krüger C, Schallreuter KU. A review of the worldwide prevalence of vitiligo in children/adolescents and adults. Int J Dermatol 2012;51:1206-12.
Pahwa P, Mehta M, Khaitan BK, Sharma VK, Ramam M. The psychosocial impact of vitiligo in Indian patients. Indian J Dermatol Venereol Leprol 2013;79:679-85.
] [Full text]
Bae JM, Kim JE, Lee RW et al.
Beyond quality of life: A call for patients’ own willingness to pay in chronic skin disease to assess psychosocial burden-A multicenter, cross-sectional, prospective survey. J Am Acad Dermatol 2020; S0190-9622: 32689-X
Yalamanchili R, Shastry V, Betkerur J. Clinico-epidemiological study and quality of life assessment in melasma. Indian J Dermatol 2015;60:519.
] [Full text]
Arora P, Meena N, Sharma P.K., Raihan M. Impact of melasma on quality of life in Indian patients. Pigment Int 2017;4:92-7.
Gupta V, Yadav D, Satapathy S et al.
Psychosocial burden of lichen planus pigmentosus is similar to vitiligo, but greater than melasma: a cross-sectional study from a tertiary-care center in north India. Indian J Dermatol Venereol Leprol 2021;87:341-7.
Raveendra L, Sidappa H, Shree S. A study of quality of life in patients with facial melanoses. Indian Dermatol Online J 2020;11:154-7. [Full text]
Basra MKA, Finlay AY. The family impact of skin diseases: the greater patient concept. Br J Dermatol 2007;156:929-37.
Yew YW, Kuan AHY, Ge L, Yap CW, Heng BH. Psychosocial impact of skin diseases: a population-based study. PLoS One. 2021;15:e0244765.
Seité S, Deshayes P, Dréno B et al.
Interest of corrective makeup in the management of patients in dermatology. Clin Cosmet Investig Dermatol 2012;5:123-8.