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World Vitiligo Day: An Insight into the Disorder and How Living with it Can Be Empowering Too

It is certainly a daunting task but not impossible—to manage and even thrive with the condition.

Let’s just start by being honest… There is absolutely no doubt that we as a culture and a society are inherently biased and discriminatory. Perhaps, there is no part of this planet existent where you can escape the politics of appearance. So, if your appearance influences so many aspects of your life, including even how you are perceived and treated at times, being diagnosed with vitiligo can seem harsh and unfair. As stated by US-based database provider, The National Center for Biotechnology Information, the prevalence of vitiligo in India has been invariably reported between 0.25% and 4%.

According to celebrity dermatologist and Founder, DermaZeal, Dr Janet Alexander Castelino, “Vitiligo is an autoimmune skin disorder, which means that the body’s own defence mechanism begins to mistakenly fight its melanin producing cells.” Melanin is the protective pigment produced by our bodies that is present in our eyes, hair, and skin and lends them colour. It absorbs the harmful ultraviolet (UV) rays and helps mitigate sun damage.

As a result, there is a loss of melanin that leads to patches of discolouration. “The cause is often multifactorial, involving a complex interplay between genetic and environmental components. However, it could occur in anybody, irrespective of race,” says Dr Janet. “Factors such as injuries, sunburn, and increased pressure by tight clothing/footwear can lead to the formation of new patches. The progress and activity can be slowed down with medication prescribed by a dermatologist.”

 

A person with vitiligo.

A combination of medical treatment and counselling can help a great deal in managing this skin condition and dealing with its ramifications.  

 

Medically, vitiligo is a ‘cosmetic’ disorder, which means it only affects the way an individual looks. But when there is so much riding on our appearance on a daily basis, it certainly has larger emotional and psychological implications. Since it has no cure, the condition can only be managed through proper medication and ointments or phototherapy and surgical options. But a thorough consultation with a dermatologist is a must, to decide upon the best course of action that is aligned with the concerns of the patient respectively.

“I had a mishap when I was around 13. I was undergoing laser treatment and the nurse using the laser machine on me was perhaps new. She used a higher intensity laser and burnt my skin to a crisp. And I still wore make-up and attended school the next day! Looking back, I am shocked at the amount of torture I inflicted on my skin,” shares Prarthana Jagan, a Bengaluru-based model, market strategist, and content creator.

 

Prarthana Jagan

Model, market strategist, and content creator, Prarthana Jagan, who was diagnosed with vitiligo at age 11.

 

“I continued treatments as a teen but then I reached a point where I just made peace with my skin and accepted myself wholeheartedly. And today I am proud to belong to the unique one percent of the world population that lives with vitiligo,” she adds. As an 11-year-old, discovering her first patch on her forehead was an unsettling experience. ”After being diagnosed with vitiligo, the doctor recommended Kryolan Dermacolor Camouflage Cream, a concealer generally used to cover up tattoos and scars. I wore that thick make-up every day for about 8 years, and got bullied at school for it. Kids teased me, called me ‘orange-face’ and ‘The Mask’. It was very hard, I had a lot of dissociative episodes, and would keep asking myself, ‘why me?’. I did not have anyone else around me who looked like me or any role models to draw inspiration from. My parents were scared that if I stepped outside without make-up, my neighbours would ask their kids to stop playing with me.”

Talking about the present scenario, Dr Janet explains, “It can be challenging on multiple levels as patients with vitiligo frequent a dermatologist all their lives, and often quite frequently too. Years ago, patients were not as informed, and more anxious and fearful about the disorder. Today, patients are a lot more accepting of it, with their only aim being curtailing the disorder’s progression. Proper patient education and counselling are definitely a must. It is important to tell the patient that vitiligo is an autoimmune disorder, which could occur in anybody, and that it is non-contagious.”

Model Winnie Harlow

Winnie Harlow, who was discovered on America's Next Top Model in 2014, has been a passionate spokesperson for vitiligo. In July 2011, she posted a YouTube video titled ‘Vitiligo: A Skin Condition, Not a Life Changer’, answering questions about living her life with the disorder.

 

As a part of beauty and fashion industry now, Prarthana says that she does feel discriminated against, and not because of my vitiligo but because of her body (and that really surprises her!). “I've met some amazing creative directors, who truly believe in the idea of inclusivity. My main aim is to garner awareness about vitiligo, and I don't care much about tokenism. I want to represent my community at the end of the day, so I just take it as it comes.”

And even as the world of fashion is gradually embracing inclusivity and beauty standards are being redefined, with the likes of Canadian-Jamaican model, Winnie Harlow, having set a positive precedent for vitiligo warriors everywhere, there is much more to be done to remove stigma and misinformation regarding this pigmentary disorder in India. Like especially busting the myth that vitiligo is contagious. IT IS NOT. And our obsession with fair skin and cultural taboos are undoubtedly part of the baggage that we need to discard.

“Sometimes your mindset does not change until life pushes you into a corner. It takes patience, courage, and strength to be able to tell yourself that you are going to love yourself unconditionally, no matter how many acne scars, stretch marks, or the beauty standards. Everyone is unique and this uniqueness is your superpower. So smile at the face of adversity and see how much you can grow,” concludes Prathana. And we couldn’t agree more.