A section of people believe it to be a mark of good luck too. But science simply says it is the dropping level of melanine in the body, which creates lightening of skin in patches, literally ushering in immense trauma and mental pain coupled with stigmatisation and self imposed isolation.
While the reason, cure and remedies to prevent this disease which is called Leucoderme/Vitiligi has not yet been found, there is a small organisation named VICARE (Vitiligo Institute for Care and Research) started by Naveen Krishna Tharur, an employee of Infosys Mangalore working to bring in some solace to Vitiligo patients. A victim of vitiligo himself, Naveen has a tale of injustice meted out on him to narrate and hence can relate to the state of mind of the patients very well.
He first noticed the gripping clutches of Vitiligo on his body when he was a young school going boy and ever since then, he wanted to do something to console, soothe and help the people suffering from the problem. In his quest, he ended up finding VICARE with the aim of networking with the organisations working for the cause of Vitiligo, promoting scientific/social, economic research.
Though the organisation could not take up research yet, it has been doing its bit to bring sunshine in the lives of the vitiligo patients. Naveen says that Vitiligo is a neglected and tough to cure disease. It is a dermatological disorder which compells people to withdraw themselves from the society.
“The mindset of the society towards victims of vitiligo is so acute that there are instances when people do not want to identify, move around and be with the people suffering from Vitiligo. The reaction is even more acute in case of women. Very often the children of the Vitiligo parents find it difficult to find proper matrimonial alliances,” says Naveen adding that the Vitiligo persons fail to get front end jobs in companies very often.
“VICARE feels that patients should indulge in self help rather than depending on others. So VICARE focuses at creating ‘patient support groups,’ which is very active in many western countries. At VICARE, we counsel individual who seek help, provide them guidance in whatever way they require. There are interactions and collaborations happening within the group, which helps the patients both directly and indirectly,” he says.
VICARE does not have a office but it has been doing yeomen service through its website. With about 50 to 60 volunteers networking for the organisation, it has already linked with other organisations which are working for similar cause and is striving to bring about a qualitative change in the lives of the people with Vitiligo.
One of the major initiatives is the link up with organisation ‘Shwetha’ in Pune to help vitiligo marriage alliance. It has close contact with the Patient Support Groups of Africa, USA etc. VICARE demands banishing the various derrogatory words connected to Vitiligo, which are often used to abuse the Vitiligo persons.
Naveen says that Vitiligo is a rigid disease which has not yet got any proof of medicines working on it. “There is massive quackery going on in the society in the name of medication for Vitiligo. People should not fall prey to these medicines. However, camouflage creames are available in the market, which can be used as an effective tool to conceal the patches,” he says and adds that the best medicine is to have a healthy mind, which always reminds the patients that they are not inferior to others just because they have vitiligo.
Naveen can be contacted at 9343248744.
