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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

HUMAN STORY: Raj Sets Out to Change His World

Young Nepali passionately committed to ending stigma forms his own NGO.

Raj Kumar Shah

Raj Kumar Shah is a young man with a mission. In 2005 he founded READ-Nepal, an NGO with the goal of transforming public attitudes to leprosy and showing that people with disabilities are able and willing to work.

"In our society, there are still people who think that leprosy is a curse from God and the result of sin," he says.

Born in the Motohari district in Nepal's Terai belt in 1976, he moved to Kathmandu with his family when still young. Diagnosed with leprosy at an early age, he is one of four siblings . three of whom have had the disease.

Raj was first admitted to Anandaban Leprosy Hospital outside Kathmandu in 1984, and was in and out of the hospital numerous times thereafter. At aged 16, he was hospitalized for two years with a condition unrelated to leprosy.

Upon being discharged, he joined a German NGO, where he registered the names of patients and dispensed medicine. Later, he took a job as a clerk at a pharmacy. As a result of these experiences, he decided to study to become a pharmacist.

He approached a local NGO about the possibility of a scholarship but a doctor there discouraged him, telling him that he could not expect to pursue his dream when his hands were so deformed.

The doctor's words stung Raj (as did the fact that he was not invited to sit down while the conversation took place) and he determined that one day he would prove the doctor wrong. Eventually he found another source of sponsorship . the Dutch doctor who had treated him at Anandaban . and went on to qualify as a pharmacist at the end of last year. Armed with his new diploma, he plans to establish his own business one day.

READ-Nepal runs a free clinic in Kathmandu (left) and also teaches handicraft skills (center and right)

But Raj's consuming passion is READ, which stands for Rehabilitation, Empowerment and Development. Funded by membership fees and donations, its ambitious agenda includes providing free prevention of impairment and disability clinics for people affected by leprosy, organizing health camps, conducting awareness programs about leprosy in communities, and offering skills training in handicrafts.

In the future, Raj would like to open a six-bed ward for in-patient treatment of ulcers. He also wants to launch a radio awareness campaign to sensitize the public to leprosy and work to reduce stigma. Only recently, when paying for some fruit at a street market, he relates how a stallholder refused to place the change his hand when he saw Raj's fingers. Angered, Raj threw the fruit back and retrieved his money.

The doctor's words stung Raj, and he determined that one day he would prove him wrong.

Some of READ's activities would appear to duplicate the services already provided under the general healthcare system. Put this to Raj, however, and he bristles, "I don't think so." From his perspective, despite the efforts made by the government and other established NGOs, people affected by leprosy still face many problems in Nepal, and much more needs to be done to help them.

"We come into this world with nothing. When we die, we can take nothing with us," he says more than once. "I want people to say that Raj made a contribution during his time on this Earth."