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Kamlabai Bokede - A life lived under the shadow of leprosy

From the earliest recordings of human existence, leprosy was an untreatable and dreaded disease, causing deformity and disability through nerve damage. In 1945 Dapsone was introduced as the first truly effective treatment for leprosy. However, prolonged, interrupted, and inadequate used of dapsone monotherapy led to drug resistance.

Kamlabai caught leprosy in early 1950, at a time when “Kushtarog” was the most feared communicable disease in India. After developing the tell-tale early signs of nerve damage in her hands, Kamlabai concealed the condition; fearful of being rejected by her parents.Eventually complete loss of sensation in her hands and clawing of her ring and little fingers led to a confirmed diagnosis. Kamlabai was sent away to live in a leprosy colony; and like so many of her generation, was expected to remain there for the rest of her life.

In the early 1980’s Multi Drug Therapy (MDT) replaced the single use of Dapsone, being extremely effective in treating leprosy within a matter of months. At the colony, Kamlabai married a fellow sufferer. They later decided to move to Nagpur where Kamlabai’s husband owned a small property. Here they remained, managing to live off a modest income generated by tenants renting an adjoining room next door. By the mid – 1990’s India still had the worlds largest number of cases, but the stigma had declined due to the effective Survey Education & Treatment programme (SET) which dramatically reduced the prevalence of deformed cases.

In 2000 WIN met Kamlabai. Widowed and struggling to look after herself, the charity provided home based ulcer management for non healing ulcers on her feet. She was further supported with any additional medical needs, including hospital visits. Following her husband’s death, Kamlabai’s house had fallen into disrepair requiring extensive building work. Once repaired, a new tenant was found, providing her with an independent income.

Now in her mid-70’s Kamlabai represents a dwindling generation of women for whom the diagnosis of leprosy was a life sentence of rejection and isolation. Due to draconian rules applied to leprosy sufferers at the colony where she lived, Kamlabai and her husband were prohibited from having children. Even in the mid-1990’s women were still abandoned in leprosy colonies and denied access to their children.

Today, those with leprosy are treated at home and once cured, live without the stigma and fear suffered by countless generations.

23 years on and WIN is committed to supporting the few remaining women like Kamlabai whose personal accounts of misery, highlight significant developments in the treatment and understanding of the disease.

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