VITILIGO - A STIGMA THAT REMAINS!
Vitiligo, commonly known as ‘safed daag’ or ‘leucoderma’ in India is a rare skin disorder where irregular white patches appear on the skin. Vitiligo can occur on any part of one’s body, mostly affecting the face, neck, hands, armpits, groin, and the insides of one’s mouth. It often starts as a pale-colored patch on the skin and turns completely white gradually. The patch may be slightly pink if there are blood vessels under the skin.
Vitiligo affects between 0.5 percent and 1 percent of the population worldwide. Stats show that about 2.5 percent of the population in India suffers from vitiligo. The world Vitiligo Day is observed on 25th June, to create awareness about the disorder, worldwide. Vitiligo is non-contagious. It does not cause any physical disability directly.
The root cause behind the occurrence of this disease remains unknown. Research says that vitiligo may be an autoimmune disorder. Autoimmune disorders occur when the immune system attacks the body's tissues and organs. In people with vitiligo, the body kills its melanin-producing cells, (melanocytes) in the skin.
Vitiligo affects all the races equally but it is more noticeable in the case of the dark-skinned population and hence begins the stigma. There are references to disease just like vitiligo in an ancient text called Papyrus Ebers, dating from 1500 BCE in Ancient Egypt. The Atharva Veda also talks about the disease vitiligo.
The etymology of the term, ‘Vitiligo’ is believed to be derived from the term, ‘Vitium’ which means ‘imperfection’ or ‘defect’. India has a history of stigma being attached to skin diseases, especially Vitiligo, popularly known as ‘Kodh’ or ‘Safed daag’. Lack of education, superstitious beliefs and zero medical literacy have lead to the widespread stigma against patients in rural areas.
Most people in India still confuse Vitiligo with Leprosy, an infectious disease commonly known as ‘Kushta Rog’ in the country. They fear that vitiligo might also spread around just by physical contact like in the case of a communicable disease. Vitiligo is in no way related to other skin diseases such as albinism, skin cancer, or leprosy.
Vitiligo has led to grave psychological problems in its patients who suffer from acute mental stress, depression, have low esteem, lack of self-confidence, anxiety, bullying, etc. People have also turned out to be suicidal or indulged in self-harm out of the immense shaming and judgment that they are subjected to from society. Many patients end up becoming anti-social. People have gone to extreme costs to hide their symptoms.
Young girls in rural areas, semi-urban areas of India have faced issues in getting married as the societal stigma prevents them from finding suitable matches. The disease proves to be a big hurdle for the patients in getting employed. The disease also imposes a huge financial burden on the families as primary caregivers who often go into debts. The ones who can’t afford it suffer from an overall negative impact on their quality of life.
Indian society is still obsessed with white skin but it ironically ostracizes and shuns people having white patches on their skin. Vitiligo, in general, isn’t a disease of extreme significance. But because of the lack of awareness and century-old myths associated with it in the villages, the patient and its family are thought to be impure or infectious.
There are bizarre myths in the Indian society associating the disease with someone giving an evil eye. In villages, due to illiteracy and unavailability of proper medical care, the patients are taken to get cured by ‘tantriks’ or even quacks. There is a religious angle added as well. Where village folks believe that the white patches are the curse of God or a sin that needs intonation and incantation by priests.
Unfortunately, as of now, there is no absolute permanent cure available for vitiligo. But it can still be greatly reduced in about 50 percent of cases, given early detection and quick treatment is provided. Research is still on, to find a cure where potential medications are under the clinical trial process and are being tested.
Social media platforms can be of great help in spreading awareness, providing the right information, and busting myths about vitiligo in rural areas. Steps should be taken to educate people at the community level, conversations should be initiated among the community members against the ostracization and normalization of the skin disorder. The quackery system in the villages and the rural areas must be done with and the health care system must be strengthened. The quacks must be punished for their fake medical setups. The patients and their families should be provided with financial aid to cover the treatment costs.
There is always a silver lining and all the hope isn’t lost. There may be a promising treatment or cure available to us shortly and till then, new coping strategies are coming up with an increased level of public acceptance towards vitiligo in society.
REFERENCES
--Vitiligo: Is It Just A Dermatological Disorder -Indian Journal of Dermatology
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2784589/#:~:text=As%20such%20vitiligo%20is%20hardly,of%20any%20pain%20or%20discomfort.
-- Neena S. Sawant, Nakul A. Vanjari, Uday Khopkar, "Gender Differences in Depression, Coping, Stigma, and Quality of Life in Patients of Vitiligo", Dermatology Research and Practice, vol. 2019, Article ID 6879412, 10 pages, 2019.
https://doi.org/10.1155/2019/6879412https://www.hindawi.com/journals/drp/2019/6879412/#abstract
--Pahwa P, Mehta M, Khaitan BK, Sharma VK, Ramam M. The psychosocial impact of vitiligo in Indian patients. Indian J Dermatol Venereol Leprol. 2013 Sep-Oct;79(5):679-85. doi: 10.4103/0378-6323.116737. PMID: 23974584.
https://pubmed.ncbi.nlm.nih.gov/23974584/
-- More Than Just A Malady: The Ugly Reality Of Social Stigma Around Vitiligo In India
http://microskinindia.com/the-ugly-reality-of-social-stigma-around-vitiligo-in-india/
Comments
Post a Comment