14 September 2009
by Kalyani Sardesai
Pune, India
In this weekly series, TOI honours the city’s unsung heroes who are doing their bit away from the public glare
Maya TulpuleUntil her mother brought about a meeting with Maya Tulpule, founderpresident of the Vitiligo Support Group Shweta Association. “All it took was some counselling, and she was set. Since it would make her feel better, we showed her how she could use make-up to conceal the patches. She got a job, went on to marry a highly qualified professional, and is well-settled in life,” smiles Tulpule with satisfaction.
Founded in 2001, the Shweta Association reaches out to over a 1,000 people in Pune, Aurangabad, Nagpur and Thane with the objective of bringing together people suffering from vitiligo together to discuss their problems, share experiences, learn scientific facts about the disorder, and above all, build a positive self-esteem.
“As of today, vitiligo is the most psychologically devastating disorder, with the highest level of social stigmatisation,” says Maya, who developed vitiligo as a nine-year-old after a bout of chicken pox and measles. “It may not be a disease per se, but the trauma it causes to the sufferer is immense.”
In her case, most of the patches went after treatment, especially on the visible parts of her person, but a few remained on her feet. “That is the most stressful condition of all. One starts wearing all-concealing clothes in order to avoid discovery,” she reminsces.
However, her family was a blessing–erudite and evolved, they were completely supportive of the young girl. “I made up my mind to contribute to society by taking up medicine. Soon, I specialised in surgery as it requires the utmost precision,” she says.
Though her condition was stable for several years, the patches began to increase eventually, until complete depigmentation took place. “It was a very difficult time in my life… I used to avoid the mirror, and I even refused a scholarship to study in Israel,” she says.
In 2000, a visit to USA gave her the necessary time and space to come to terms with her suffering, and view the situation anew.
And in 2001, Shweta Association got off the ground. So, be it counselling for the sufferer and his/her family, running a marriage bureau for vitiligo sufferers, data collection for psychological and genetic diseases, showing them how to camoflauge patches with concealing make-up or conducting programmes in school to prevent discrimination against young sufferers, Shweta covers a vast and varied ground.
Soon, Maya would undertake a brave, new enterpise–namely a film on the subect of vitiligo. “I approached filmmakers Sunil Sukhtankar and Sumitra Bhave to make the film, and informed them of my decision to produce the film.”
Though it was unchartered territory, she managed to put the money together by selling a flat and through donations from family and friends. The movie released in 2006, to much critical acclaim.
“Over 60 per cent vitiligo sufferers develop the condition before 15 years of age; this robs them of their childhood, affects their academics and hampers their social relationships and all-round development,” she says. “Our increasingly unhealthy lifestyles will lead to diabetes, stress and thyroid disorders–which will lead to more cases of vitiligo. In such a scenario, the need for an informed, rational and sensitive approach is a must.”
What is Vitiligo?
Though not a disease per se, Vitiligo is an autoimmune disorder in which the body destroys its own pigment cells–melanocytes or cells that give colour to skin. However, this depigmentation of skin does not affect other organs of the body, nor does it affect the person’s mental and physical abilities. It can be transmitted to the next generation in 10 to 15% of the cases, but it is not contagious. Cosmetic disfigurement leads to emotional problems, damage to self-esteem and depression.
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