The fast increasing alienated group of vitiligo-affected now has reasons to rejoice. City dermatologists have now awakened to the reality of support groups.
City doctor to set up a helpline and initiate moves to establish association for vitiligo patients
Thirty-year-old Prajay Ghosh has learnt the hard way that he can have no friends. The emerging white patches on his body have been his ticket to a friendless life. Suffering from vitiligo or leucoderma since he was 13, Ghosh has endured rebuttals and discrimination, and is now a determined loner.
The fast increasing alienated group of vitiligo-affected now has reasons to rejoice. After sticking to their individual line of treatment to control the ailment, city dermatologists have now awakened to the reality that support groups for the affected are the need of the hour.
Working in that direction dermatologist Dr Pankaj Maniar is all set to provide this affected group with a dedicated helpline on the occasion of World Vitiligo Day on May 19. He has also initiated moves to set up an association for vitiligo patients, which will act as a ventilator for them.
Speaking to DNA, Dr Maniar felt that such a forum will help these patients understand the disease better and present before them emerging options of treatment. “Depression is a major problem with those suffering from leucoderma. They need sustained counselling. Such a forum will act as a venting point for them.
Now, they do not talk about the disease due to the social stigma. This support group can help them establish a network with other vitiligo patients,” said Maniar.
This will probably be the first of its kind support group for the leucoderma-affected in the country. The US-based Vitiligo Support International is the largest vitiligo organisation in the world. It provides free access to online message boards, chat rooms, frequently asked questions, information and articles as well as patient-referred doctor search. This group advocates on behalf of patients, conducts patient conferences and has local support groups. The Indian equivalent is also keen to adopt the services provided by the international organisation.
Families affected by vitiligo continue to face social discrimination. For those like Ghosh, it often gets too much. “I really have a tough time. Despite the years I am very sensitive to discrimination. Few share a meal with me or invite me for a meal. Even educated people think that leucoderma is contagious,” said Ghosh.
The Indian Medical Association (IMA) is also embarking on an awareness drive aimed at dispelling myths about leucoderma. The Mumbai-west branch of IMA will also conduct workshops for doctors to help them understand the disease better and provide an insight into the latest therapies.
IMA Mumbai-west president Dr Akil Contractor felt that sustained efforts must be made to do away with the social stigma faced by these patients. “The time has come for dermatologists to unite and educate the people that vitiligo is not contagious. It can be controlled but the causative factors are not known,” said Contractor.
The popular line of treatment for this organ-specific disease is the application of Neobsoralen lotion or taking it orally.
For smaller patches, skin grafting works wonders.
Dermatologists and plastic surgeons are also using tattoos to colour small patches. Laser treatment is the latest technology in the market. Dr Contractor confessed that an estimated 10 per cent of the affected may recover from the disease completely. Since no recent studies have been done on the spread of vitiligo in the country, there are no statistics on the affected population.
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