Sanjeev Gupta, 43, won the initial funding for his not-for-profit, Psoriasis Undone for New Joy (PUNJ), in a bet. In 2009, Gupta’s boss had challenged him to quit smoking and promised to give him Rs 2.5 lakh to set up his NGO in return. PUNJ was launched in January this year.
“I did it. I quit smoking. I then set aside the money for PUNJ with equal contribution from me,” said Gupta, who suffers from psoriasis. Gupta, who heads the quality assurance department of a pharmaceutical company, got his first lesion on his neck in 2001. he was doing his PhD at Oxford then. Since then, the Khargar resident has had several attacks of varying degrees depending on his medication.
“There is not a single NGO started by a psoriasis patient. Most of the groups have been started by doctors to offer treatment. Our NGO will be patient-driven, primarily to facilitate exchange of ideas, resources, and information to cope with the disease,” said Gupta.
The NGO plans to reach out to psoriasis patients and extend financial support to economically weaker psoriasis patients in the future.
Gupta has suffered the social exclusion that accompanies the dry, flaky skin. Gupta has to have a bath three times a day, including once in his office. His family, including his wife, Taruna and son, Urit, 10, understand his disease and help him cope with it. In 2007, when the couple invited a couple living in the neighbourhood for dinner, the wife refused to eat in their house. “She did not say anything but I think she did not feel comfortable eating with me,” said Gupta.
Gupta has tried different kinds of treatment including allopathic, ayurvedic and homeopathic medication. Currently, he is taking ayurvedic treatment from a doctor in Hapur, Uttar Pradesh. To counter the disease, Gupta does yoga every morning to reduce his stress levels and tries to maintain a healthy lifestyle by eating nutritious food. He emphasises that once a medication works and eases the lesions, but there is no guarantee that it would work again.
Apart from the patient, even family members feel the stress of the disease. “I used to initially feel that he does not take care of himself. I had to understand that this is a part and parcel of our life. We have to be prepared for any eventuality by way of disruption of plans or people's reaction,” said Taruna, who is also a pharmacist and works in a national research institute in the city.
The group is likely to have its first meeting by the end of this month at Gupta's home. Some members, who helped start the organisation, ran in the Dream Run of the Mumbai marathon 2012. “I have contacted some patients online. I am hoping to carry forward the activities after the first meeting,” said Gupta.