Safoora Hilal
Afreen Nazir (20), an undergraduate student, was 10 when she discovered a white patch on her left eye, which started spreading within a week. She didn’t realize what it was. She approached her parents who panicked and took her to a dermatologist at the earliest. The parents were worried about the consequences their daughter would face if the disease spreads.
The doctor informed the family that it was ‘Vitiligo‘ that the daughter was suffering from and prescribed some medicines. He also assured that she’ll get rid of it, and that it was only a result of weakness. However, with time, she realized that the doctor wasn’t aware of the disease too. And till 2020, the disease had spread all over her body.
Vitiligo happens to be a pigmentation disorder in which melanocytes in the skin are destroyed. It tends to cause patchy discoloration across the skin in different parts of the body. The condition may also appear inside of the mouth and nose and in the retina. It may also cause premature greying of the hair across the body and scalp. In some patients, these white spots appear in one area of the body and in some, these spots spread throughout the body slowly but surely.
Studies suggest that O.5 % – 1% of the population suffers from vitiligo, worldwide. And between 0.25% – 4% of the Indian population is affected by Vitiligo.
“I was only 12, a 6th grade student who had to face discrimination due to ‘Vitiligo.‘ I would think to myself how ugly I was. My friends would tease me and leave me alone when I was undergoing mental trauma. I didn’t look into the mirror for many years since I wasn’t able to look at my ugly face. I developed anxiety and depressive disorders,” Afreen said.
“However, with time, my friends accepted me. It felt good when I realized that they didn’t care how I looked, but sometimes, it doesn’t feel enough. The scars on my face never mattered to me, but deep scars inside my heart grow fresh every time someone comments on the scars over my face,” she added.
Afreen says that she didn’t want to be treated, anymore. “I’ve accepted myself the way I am and feel proud. I want to convey that those suffering from Vitiligo must not be discriminated against or mistreated. Victims who still fail to achieve satisfactory results with the available options must not lose hope and not let the white patch scar their mind,” she concludes.
There are various international organizations and NGOs that are raising awareness about Vitiligo, the social stigma around it and the mental challenges faced by those affected by Vitiligo. Some of them are:
1. VIPOC
2. Vitiligo research foundation
3. Vitiligo support and awareness foundation
4. The vitiligo society
5. Autoimmune organization, etc
In India, there’s
1. Indian vitiligo association
2. Shweta association
3. Aarus foundation
4. Institute of applied dermatology, etc.
There is no such specific organization or Vitiligo healthcare in Kashmir, however.
Jahangir Ahmad Dar (36), a bank attendant shared his story with us. “I was 23 when Vitiligo got to me. It started with a tiny white spot on the right finger. I didn’t know back then, what it was. So, I neglected it and did not visit any doctor,” he says.
“But my mother got anxious. She was worried what would happen if it spread to areas beyond what had already been occupied. Her worries had to do with my marriage. What if her son never got married since it was getting worse with time,” Jahangir said.
Jahangir narrates how he visited several dermatologists, who would prescribe him all sorts of medicines and creams which remained ineffective. He also went through an Ayurveda treatment which failed to show results. His mother finally found some faith-healer who was able to stop the spread of the disease.
Sharing how the disease affected him mentally, he says that people would avoid sitting next to him or eat food with him. Often, comments would be passed about his ‘white patches,’ and he would be depressed. “But,” he says, “My friends learned quickly and accepted me. My family started loving me more. I didn’t lose my self- esteem. And I always told myself that it was only a skin disease and not a fatal disease. I held on to positive thoughts and currently, I’m working as a bank attendant. I’m not ashamed of my Vitiligo and I’m living my life happily,” he said.
Dermatologist Dr. Suhail Raheem Rather (35), talking to The Kashmiriyat explains that the disease “occurs due to autoimmune destruction of functional melanocytes. Vitiligo can occur at any age but it’s more common before the age of 30.”
“There is no cure but it is a treatable condition with many treatment options. One can get upto 100% results if properly treated,” he said. He added that the treatment takes at least 1-2 months to show some response. “But patients in Kashmir are usually not compliant, making treatment difficult,” he said.
Gulzar Ahmad Wani (30), a shopkeeper, narrated his ordeal of being a victim of Vitiligo. He said that he was about 6 years old when he discovered a white patch on his left leg. “I didn’t tell my parents about it, then. But but after an year, it started spreading. My father rushed me to the doctor, who prescribed some oral medicines and soaps. The doctor had said to me that I’ll be cured,” Gulzar said.
“I underwent various treatments but the disease has only continuously spread all over my body. There are many scientific treatments, right now but back then, only oral medication was available,” he added.
“When I entered teenage, I started to pay more attention to my appearance. I did not feel good with my white patches. Whenever I went for travel or walk in public spaces, people would stare at me. Some of them would ask me what it was. ‘Don’t you go for any treatment? Is it infectious,’ they would ask me,” said Gulzar.
He says that it isn’t the disease which really hurts. It is the issues that it come with it including depression, lack of confidence, lack of self-esteem, anxiety and other social phobias that are the ‘silent killers,’ as per Gulzar.
He says a patch of leukoderma incised bigger on mind than it appeared on the skin. “I ordered some leukoderma booklets, online. I also visit many Vitiligo Awareness Programs which help me with the many misconceptions and the questions that occur in my mind,” Gulzar said. He concluded by saying that these programs often answered his questions and helped him gain clarity over the disease.
Meanwhile, Dr. Rather told The Kashmiriyat that patients with vitiligo should avoid foods rich in phenols (mango, berries, tomatoes), and citric fruits ( tomatoes, orange, lemon). He said that food rich in omega 3 fatty acid and antioxidants (walnuts, apples) were good for Vitiligo patients. Such foods reduce progression and stress on the body.
Dr. Rather adds that the various myths surrounding this condition, which include the myth that the disease was contagious or life threatening were baseless and caused “a profound psychological impact on patients’ minds.”
He adds, “Solacing and Cognitive Behavioural Therapy could help improving self-esteem, body image among others for the patients with vitiligo.”