When Pune-based computer science student Rizwana Shaikh (18) first saw a white patch develop on her left arm, she wasn’t unduly worried. Nor were her family members, easily attributing it to an insect bite or a food allergy. But after another patch appeared on her face, she was rushed to a doctor and tests diagnosed a condition known as vitiligo, an auto-immune disorder in which the body destroys its own melanocyte pigment cells.
In a similar case, Alok Gaikwad (10) had transformed from a bubbly kid into a morose introvert because vitiligo had affected almost his entire body. With the two victims proving resistant to all medication, they were referred to Pune-based Dr. Maya Tulpule, the founder of Shweta Association, a support group for the vitiligo affected. Since then, following counseling and therapeutic sessions with Dr. Tulpule and her associates, these young victims of vitiligo have shown positive changes.
“We have successfully renewed Alok’s interest in music and we hope he will pursue his hobby seriously. It will help him to get back his social life,” says Dr. Tulpule. Rizwana too, has regained her lost esteem and confidence. Promoted in 2001 by Dr. Tulpule and like-minded individuals suffering from vitiligo, Shweta Association reaches out and tends to over a 1,000 afflicted people in Pune, Aurangabad, Nagpur and Thane, inviting them to share their experiences, learn scientific facts about the disorder, and re-build their self-esteem and confidence.
“Vitiligo is not a disease but a psychologically devastating disorder that leads to the highest level of social stigmatisation,” says Dr. Tulpule, herself a victim as a nine-year-old after an attack of chicken pox and measles. Although in her case most patches disappeared after treatment, they reappeared later, leading to total depigmentation. This childhood trauma prompted her to study medicine. After acquiring an MBBS degree from Pune’s B.J. Medical College with specialisation in surgery, Tulpule established a 20-bed nursing home in Pune’s Karve Nagar in 2001. “It was after I visited the US in 2000, and studied the excellent work done by voluntary support groups that the idea of promoting the Shweta Association to aid, advise and counsel vitiligo victims took shape,” she recalls.
The Shweta Association is dedicated to rehabilitating the vitiligo afflicted and also runs a marriage bureau and clinic, to provide guidance on camouflaging techniques for skin patches. Moreover, under the aegis of the association, in 2005 Dr. Tulpule produced a 120-minute Marathi feature film titled Nital (Transparent) which won wide plaudits. The film raised awareness of this disorder and through counseling, brought hope to the estimated 1 percent of the 1.17 billion Indians beset with this condition.
To propogate the message that depigmentation of skin does not adversely affect other organs of the body or a person’s mental or physical abilities, and nor is it contagious, Dr. Tulpule works tirelessly and allays unwarranted fears and anxieties about this minor skin disorder. “It is very important to alleviate the social stigma and personal anguish of the afflicted, because it can generate suicidal tendencies. People have to be made to understand that beauty is more than skin deep,” she states.
The force be with you!
Huned Contractor (Pune)