It is hard to believe that, in some cultures, vitiligo is still considered a curse of the Gods and the ones who have been living with it are paying for their evil deeds. India is one of such countries where many superstitious beliefs shroud rational thinking. To fight these misconceptions and debunk some common myths around vitiligo, a 23-year-old young man from Mumbai is working tirelessly. He made AARUS Foundation a reality, a nonprofit organization working towards vitiligo awareness in India.
The founder of the foundation, Akash Tiwari noticed his first vitiligo patch in 2014. It all started as a small asymmetrical circle on his leg. He recalls, “When you are in your late 20s, you yearn for acceptance from your peers so having vitiligo made everything a lot tougher. I felt out of place.”
Akash can vividly remember his parents taking him to a number of clinics and innumerable skin specialists in the desperate hope of getting him cured. While some treatments managed to re-pigment some patches, none of them offered long-term, permanent solution.
When medical science did not help, Akash’s family turned to superstitions. He pours his heart out, “I was told that there are bacteria in my blood, which are eating away my melanin. I was given ridiculous powders known as BHABOOTI and was asked to apply it on the white patches. Just like many vitiligans living in India, I was misled and fooled by such money hoarding BABAs and their gimmicky treatments.”
Bullying is something every vitiligo fighter must have faced in any form, at any point. Akash recalls his experiences, “A friend called me Zebra mocking at my dual shaded skin tone. I have been called names such as Dalmatian and what not. I even was in a relationship, but my partner could not handle the societal pressure of dating someone with vitiligo and left me abandoned. At that moment, I felt lost and did not know how to handle my emotions. I even attempted suicide twice.”
But, a loving family and friends helped Akash get through this tough time. He turned to spiritualism and got associated with International Society of Krishna Consciousness (ISKCON) as a spiritual devotee. Akash derived his sense of purpose and positivity from Srimad Bhagwat Gita and Bhagavatam. He shares, “I am inherently a spiritual person so connecting with the Supreme power, Krishna, was a blessing and it really helped me come out of the depressive web of negative thoughts. I have also been extremely fortunate to be surrounded by my three friends for life. Thanks to them, I got used to living with vitiligo, and the self-acceptance did not take a fairly long time.”
Today Akash feels blessed with vitiligo. He tells why “Vitiligo has forged me into a better and humble person. It has taught me to stop judging people for their appearance. I made me start respecting the uniqueness of every person. If it had not been for vitiligo and all those years of struggle and discrimination, I would have never thought of starting AARUS Foundation.”
At present, Akash is extremely focused on raising vitiligo awareness. He is constantly getting in touch with other support teams to take this initiative to the next level. The foundation is currently working in Mumbai but intends to target every city and village in India to spread awareness. “In a country which is obsessed with fair and flawless skin, and any kind of scar is ridiculed upon. So, one can imagine what vitiligo fighters would go through. AARUS Foundation comes with a lot of rigor and enthusiasm to create vitiligo awareness amongst the masses, with the focus in the rural and remote areas of India. Small villages and towns are our main focal as well as pain areas where people need to be educated so that vitiligo is not considered god’s curse anymore.” Akash shares his plans.
Akash feels that vitiligo is just loss of skin color and not the loss of purpose. Every Vitiligan is entitled to receive respect and love from society. When asked him what message he has for youngsters with vitiligo, he replied with something beautiful and empowering: “Just take a good look in the mirror and stop being so self-critical. Everyone has flaws, and perfection doesn’t exist. So take it easy and be yourself.”
Apart from steering AARUS Foundation, Akash is studying and working part-time with a company. He is helping his father run the family and is contributing to his younger sister’s education. We wish him all the best!