FACE TO FACE with Urmila Prabhu

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‘Voice of Vitiligo’, the first vitiligo support group in Mumbai launched by Urmila Prabhu, 52, aims to spread awareness, build an active vitiligo community, and combat the huge stigma attached to the dis- ease. This disorder is characterised by milky white patches of different sizes and shapes on the body, and affects 1-2% of the world population. Urmila Prabhu spoke to A. Radhakrishnan about this disease and the support systems available for those suffering from it.

What is the main cause of vitiligo?
‘Vitiligo’ derived from Latin, is due to the loss of melanin, the pigment that gives the skin its characteristic color, due to destruction of pigment forming cells known as melano- cytes. White patches appear all over the body. It is more noticeable in dark-skinned people. It causes cosmetic problems.

How does a person get vitiligo?
Vitiligo is an autoimmune disease, which happens when your immune system mistakenly attacks and destroys some part of your own body, like melanocytes in the skin, body’s own tissues and organs.

When and where does vitiligo usually start?
It can start at any age, but often first appears between the ages of 20 and 30. Beginning on your face above your eyes or on your neck, it progresses to the armpits, elbows, genitalia, hands or knees. Often symmetrical, it can spread over your entire body. Some people with vitiligo also have patches of pigment loss affecting the hair on their scalp or body. In people with vitiligo, the immune system appears to attack the pigment cells (melanocytes) in the skin.

How is vitiligo diagnosed?
Your doctor, apart from gathering your personal and family medical history will examine your skin and take a small sample (biopsy) of the affected skin and draw blood for lab tests to look for underlying autoimmune conditions, such as anemia or diabetes.

Is vitiligo curable?
There is no ‘cure’, though sometimes patches go away on their own. Otherwise, doctors can prescribe treatments that might help even out skin tone. Vitiligo can affect people of any age, gender, or ethnicity. It is usually a lifelong condition, with no cure. Treatment options include exposure to UVA or UVB light, and depigmentation of the skin. Vitiligo is a genetic disease. It is caused by inheritance of multiple casual genes simultaneously, possibly in different combina- tions in different people, plus exposure to environmental risk factors that remain mostly unknown. It isn’t contagious, and doesn’t cause pain, nor is it medically dangerous. It affects both males and females alike.

Is it hereditary?
Given that the percentage of people seen with this disease is only one percent, most children will not get vitiligo even if a parent has it, and most people with vitiligo do not have a family history of the disorder.

Can vitiligo be caused by stress?
Stress/depression, though not the direct cause can aggravate it. Stress negatively impacts our immune system, and being anxious or stressed can aggravate autoimmune conditions (including vitiligo and psoriasis). Vitiligo is highly associated with a number of autoimmune diseases, including autoimmune thyroid diseases like Hashimoto’s thyroiditis and Graves’ disease.

Is itching a symptom of vitiligo?
The edges of the patch may be smooth or irregular, sometimes red and inflamed, or with brownish discolouration. It doesn’t cause discomfort to your skin, such as dryness, but the patches may occasionally be itchy, varying from person to person.

What are the different types of vitiligo?
Segmental, which affects one segment, or side, of the body (a hand, a leg, or the face) and in fifty percent of individuals some hair (on head, eyebrows, and eyelashes), and non-segmental, which is more common and affects both sides of the body. The symptoms appear at an early age and progress for only a few years.

What makes vitiligo spread?
Unless treated, most people with vitiligo will continue to notice their condition getting worse over several years. For some, it is a slow and gradual process affecting only small patches of the skin, but for others it is more rapid and extensive. But it is neither fatal nor life-threatening, though it attracts social stigma, resulting in low self-esteem. A sad myth is that it is related to other skin diseases such as skin cancer, leprosy, and albinism.

What has been your personal tryst with vitiligo?
My life-partner passed away four years ago in September and then in May, my daughter married and went off to London. The following day my father passed away in Mumbai. From four of us staying in a house, suddenly I started living alone. Lonely and depressed, I began neglecting myself and my health. I lost my appetite, and daily chores were becoming a burden. Even taking a bath was an effort. My friends started noticing the change in me. I was not ready to be happy.
Several months later, while getting ready to attend a family wedding, my sister stopped me and asked me about a white patch on my right shoulder?’ When I inspected myself in the mirror, I saw a small white patch, with a radius of about half centimeter but overlooked it, thinking it was some skin discoloration.
Four months later, however it had grown in size. A dermatologist diagnosed it as fungal infection and asked me to apply some fungicide. But the patch only increased to a radius of 1.5 cm. Finally, a homeopath, my daughter’s friend told me it was vitiligo. I had never heard of it. I literally collapsed. And shaken, took an appointment with the best homeopath in town, who confirmed and prescribed some medicines. Soon my patch stopped growing and slowly turned brown to blend with my skin.

How did you overcome your inhibitions?
‘Why me?’ was my regular initial refrain. It was scary, and I faced anxiety, but thankfully, as it was not on a visible part of my body, I did not have to face much hostility. My sister is the pillar of my strength, and my daughter and son-in-law are very, very loving, caring, and sensitive. I am also fortunate to have kind friends. I soon realised that the victim attitude was in my head, as after being diagnosed with vitiligo, I had started looking at myself as less beautiful, and started fearing rejection by the society. My anxiety started getting the better of me.I started reading self-help books, Lousie Hay’s Heal Yourself helped me a lot.

Why is society so hostile to those with vitiligo?
Beauty is well-defined in our culture. The girl on the Filmfare, Vogue, or a Filmstar cover is beautiful, but not the girl with pimples. Hence, to get accepted with vitiligo will take a long time. When I was diagnosed, I became very, very nervous. One of the doctors was very insensitive towards me. He told me to think of the larger issues like global warming or children dying in Africa (not in India)! I was aghast.

What about support groups?
I searched the net for more information on vitiligo and alsosupport groups in Mumbai as I wanted to share experi- ences with others who had vitiligo. But there were none. Hence I started ‘Voice of Vitiligo’ for people like me, as I do not want anyone or their family to suffer like me!
I am often asked why I bothered since my vitiligo cannot be seen, and so what was the need to shout from the roof top? Vitiligo is a very individualistic disorder; hence what suits one may not be applicable to another. So there is a need for support. My friends, especially Tanaz, helped me tremen- dously to give the support group its present form and shape. Yet I confess, it is far from a mass movement. People sadly live a fearful life and do not come out in open arguing that ‘my daughter must get married’, or ‘my son should get a good girl’, or ‘I may not get a job of my choice if people will come to know that I suffer from vitiligo’.
We seek media help to make it a mass movement, to make it totally and completely acceptable. We need big stars from all fields to lend support so that all can say ‘Let’s accept Vitiligo as it is’. Though the government has many important things to do, our cause could also be helped, I guess.

What do you tell your target audience?
At support meets, I share my personal stories and attempt to bring and bind people together. I tell them, ‘Please come out in the open, accept it, don’t be cruel to yourself, you are important, you matter, don’t hide. It is indeed difficult, but not impossible. Let the world take notice of us. We are part of the same universe. Do join me, people having vitiligo and without, let’s work together to make this a compassionate world’.

What’s your advice to people with vitiligo?
I have healed nearly 90 percent by keeping myself totally positive, by focusing on work at hand, and taking medicines at the right time. I have joined, yoga and dance classes. As a Rotarian, I do lots of charitable work, and the fellowship keeps me happy. Over and above, I say just be yourself, do not be afraid of the society, develop skills, work hard, try to be a success in your field, but take no pressure. Believe in yourself, and believe in the universe; you will find peace and happiness.


A. Radhakrishnan

A. Radhakrishnan is a Pune-based freelance journalist, poet and short story writer.

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