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Submitted by Shakti.Patra on 24 June 2018
Urmila Prabhu speaking at a Vitiligo forum with a black sari and golden blouse

Urmila Prabhu, who developed vitiligo in her forties, has launched the Voice of Vitiligo, the first vitiligo support group in Mumbai, to spread awareness, build an active vitiligo community and combat the huge stigma attached to the disease.

My vitiligo started in my late forties. I was going through a phase of extreme emotions. There was bereavement and celebrations within months. I had lost my partner in 2015, leaving a huge void in my life. Within eight months my daughter decided to get married. She was having a destination wedding in East Europe. I had gone for it. The next morning after the marriage, I got a call from India that my father had suddenly passed away.I left my daughter’s wedding celebrations and immediately rushed back for my father’s funeral. I felt my life going topsy-turvy.

It was not long ago when four of us lived happily together in the house, but now I was left alone. I was mentally not ready to live on my own. I was still grappling with the turn of events.

Grieving by myself

Lonely and depressed, I began neglecting myself, my health. I lost my appetite and wouldn’t bother to eat. Daily chores were becoming a burden. Even to take a bath was an effort. My friends started noticing the change in me. They would come home to cheer me, but I would turn them away. I was not ready to be happy.

White patches appear

Several months later, I had to attend a family wedding. I wore a sari and got ready with great difficulty. My sister, Nilima, a resident of Dubai, was accompanying me for the wedding. When I stepped out of my room and we were about to leave, my sister stopped me and asked: ‘Urmilla, what is that white patch on your right shoulder?’ I said I don’t know as I couldn’t see it. Later, when I inspected myself in the mirror, I saw that the white patch was quite small. It had a radius of about half centimetre. Must be some skin discoloration, I thought and didn’t give it much importance.

Four months later, when my sister visited me again, she noticed the patch had grown in size. Now she insisted we visit a dermatologist. The dermatologist diagnosed it as fungal infection and asked me to apply some fungicide. But instead of decreasing, the patch only increased. I visited another dermatologist, but there too I had the same experience. The patch had grown significantly now and measured a radius of 1.5 cm.

Vitiligo confirmed

Finally, I was recommended to a homeopath, a young girl who was my daughter’s friend. She saw the patch and said ‘Aunty I think this is vitiligo’. I had not even heard the word ‘vitiligo’. But when she explained the condition to me, I literally collapsed. I said this is not for me.

Quite shaken by this young girl’s disclosure, I took an appointment with the best homeopath in town. He confirmed it was vitiligo and prescribed some medicines. I could sense within months that the medicines were working well for me. My patch had not grown at all. On the contrary, it was slowly turning brown to blend with my skin.

Around this time, I started searching the net to know more about vitiligo. I wanted to find out if there was any support group. Being a single woman, I wanted to talk to somebody who had vitiligo and share their experiences. But there were none.

Launch vitiligo support group

In 2017, I started ‘Voice of Vitiligo’, the first support group for vitiligo in Bombay. I got many responses through Facebook. I realised everyone wanted to talk to someone but didn’t know where to turn.

Through Voice of Vitiligo, I want to raise awareness about vitiligo, I want to connect with other people in the vitiligo community and build a positive conversation around the condition. I want to accept people with vitiligo as they are. I want see beyond white patches.I want the world to know to that -

  1. Vitiligo is not - Harmful
  2. Vitiligo is not - Contagious
  3. Vitiligo is not - Infectious

Vitiligo is a disorder in which white patches of skin appear on different parts of the body such as hands, feet, face, lips. This happens because the cells that make melanin – the pigment that gives color to the skin - are destroyed.

High prevalence in India

India has the highest ratio of vitiligo in the world, yet the awareness is one of the lowest. There are numerous myths and misconceptions surrounding vitiligo. There is a bigger stigma attached to the disease. I know of a young man who was refused a job because he had vitiligo in his hands. In fact, the person conducting the interviews refused to shake hands with him, even though he shook hands with all other candidates. It was most humiliating. People hesitate to sit next to a person who has vitiligo fearing they may contract the disease. Similarly, children with vitiligo are ostracised. Finding a match is not easy for youngsters with vitiligo.

There is a huge stigma attached to vitiligo, particularly in our country. As a result, people are hesitant to talk about their condition. They want to be as hush as possible about it. I have had cases of mothers and fathers who have vitiligo refusing to join Voice of Vitiligo for fear word will spread and their son/daughter will not be able to get married. Getting married is a huge concern in India. Everybody wants to share their vitiligo story but yet be anonymous. People are not willing to come out in the open.

This has been my one of my biggest hurdles in making Voice of Vitiligo a mass movement. We have such strong campaigns for HIV/AIDS, cancer. It is okay to shake hands with a person who has HIV, or be friends with a person who has cancer, but not vitiligo. We don’t have such a strong support group to say it is okay to be friends with vitiligo.

Come to terms with vitiligo

I want to tell people with vitiligo to come to terms with their body; that they have to be strong mentally and emotionally to face vitiligo. I want to build, confidence, hope and optimism for the vitiligo community. Nobody should feel isolated, discriminated or distressed. When you treat yourself well, society will be forced to treat you well.

People with vitiligo should not forget that stress is one of the main triggers. My vitiligo appeared because of acute emotional pain and grief. I used to think at one point that there is no reason for me to live. Now I am calmer. I have accepted it. I think differently. Maybe I got vitiligo to help others. I have stopped worrying about the future. I live for the moment. I have very good support system from my daughter, my son-in-law, my sister, a very good set of friends who look beyond these patches - who see the real Urmila.