Stories of love, hope and recovery among leprosy patients, which transcend their battle against this debilitating and isolating disease

Sabarkantha, Gujarat/Chandrapur, Maharashtra: India still houses over half of the world's leprosy patients, despite declaring disease “elimination” in 2005. Of the 1,27,506 active cases estimated across the globe in 2020, the country alone accounted for 65,147 cases. According to World Health Organisation, the annual case detection rate in the country is 4.56 per 10,000 population. 

Leprosy or Hansen’s disease is a curable but chronic infectious disease caused by the slow-growing Mycobacterium leprae, the only known human bacterial pathogen that infects and damages the peripheral nerves. It causes no pain in the infected region, which means the patient will be ignorant about his/her condition until it gets serious.

The only positive aspect is that leprosy is the least infectious of all communicable diseases, including tuberculosis, common cold, measles and chickenpox, and most people (95 to 98%) will never develop it even if exposed to leprosy bacilli. Repeated and long-term contact with an infected, undiagnosed and untreated individual alone can trigger spread of the disease, which unlike diabetes or blood pressure is not hereditary. 

The real problem with leprosy is the discrimination that comes with it, which the United Nations has labelled as a human rights issue. Its long-term impact includes emotional trauma and socioeconomic loss due to discrimination and deformity. In such cases, helping hands like Sahyog Kushtha Yagna Trust in Rajendra Nagar village in Sabarkantha district of Gujarat and Maharogi Sewa Samiti in Anandwan village in Maharashtra’s Chandrapur district become the last resort of leprosy-afflicted or rehabilitated persons. 

While some find new families away from their own families that ostracised them, others find lasting love. Many turn caregivers for life, irrespective of whether they work at hospitals or colonies. Others revel in the simple joys of life, like applying mehndi or cutting somebody's hair. Below are some lesser-heard stories among the ones heard much too often. 

(Left to right) Anjana Dhude, Indira Chaudhary and Janki Raut arrived at different times at the hostel called ‘Apulki’ (house of affection). Anjana (62) was diagnosed with leprosy in 2020. Twenty years before that, Indira was under leprosy treatment in a hospital when her husband told her point-blank that he was marrying again. Stunned but not silent, she replied helplessly, “You can marry as many times as you want. What can I do now?” She has made a new life in the hostel with her best friend Janki, who arrived here in 2005. “I am much happier here. I do not miss my home anymore,” says Indira, whose children and mother-in-law visit her at times.

Aniket* (13) first noticed these patches on his hands three years ago, when he was in class 6. He has no sensation in the area. “I suffered an injury in the forearm recently, but had no pain,” says Ankit, who is under leprosy treatment lasting for a year. 

Sleep is Bachchu Bhai Chavda's (57) best friend these days. He was an adolescent when diagnosed with leprosy, which was left untreated until it was too late. At 45, he lost his left eye. His legs and fingers are deformed. He was married and separated twice and eventually ended up at the hostel, where all his medical needs are taken care of. 

Chandrakala Chatare (30), pictured with her husband Punjaram and children Kiran (6) and Kavita (5), was diagnosed with leprosy in 2018, barely six months after she gave birth to Kavita. The doctor prescribed her a six-month course of medicines, but she stopped them in between. Now, she is here on treatment for the ulcers in her legs and the deformity in her toes. Her family has come to meet her in the hostel from their village in Kumuram Bheem Asifabad district of Telangana. 

Maruti Bondre (70) feeds lunch to his wife Chandrakala, who has lost all her fingers and has been affected by lagophthalmos (inability to close one or both eyes completely) due to leprosy. He too has lost his fingers partially, but he makes it a point to feed her daily, before having his share. Maruti was diagnosed with leprosy at 25. Within a year, his wife also contracted it. Their son passed away when he was 4 years old. Their daughter is married and visits them whenever she can. Maruti has not been home for many years. “There is nothing left there for me. My life’s purpose is to take care of my wife. She understands my pain and I understand hers.” And when she asks him how he is and whether he has had food, he feels better. “Life after leprosy was tough. Gradually, I learnt to keep going despite the ups and downs. Why feel sad? Eat well, live well,” he laughs. 

Rangappa (40), who lost his fingers partially to deformity and nerve damage, cuts hair and shaves the beard of another leprosy-cured person at the community salon in Anandwan village in Maharashtra.

Limb exercises, sensory integration and massages are given to patients to prevent further deformities, and arrest long-term nerve damage and further degenerative and irreversible effects. The treatments are prescribed for either six months or one year, along with Multi-Drug Therapy. Oil/Vaseline massages are given to avoid cracks in palms and soles, which may lead to ulcers.

Usha Gaikwad (63) dresses a patient’s trophic ulcer wounds, something she has been doing for the last 40 years. A nurse at the Sita Ratan Leprosy Hospital, Anandwan. Usha spends an hour (6.30 am to 7.30 am) at the colony daily, tending to the wounds, before she heads off to work. Usha contracted leprosy when in class 5. She had patches on her skin, and her face and other parts began to swell. Her classmates kept a distance and relatives treated her differently. At 14, two years after she was diagnosed, Usha decided to leave home. "I visited the Sita Ratan hospital for treatment, and later decided to stay back to become a nurse." She also met her late husband, a leprosy patient, there. They were both cured of leprosy and had a daughter, who also serves as a nurse now.

Sonam Yadav (22) with her husband Rajesh Yadav (38) and son Ravi (5), at her quarters in Rajendra Nagar. Sonam's family abandoned her as she had severe leprosy in her adolescence. The Sahyog Kushtha Yagna Trust provided her with a place to stay and proper healthcare. She met her husband Rajesh at the facility. Though he came to the centre as a patient at a young age, he has been working as a healthcare provider for more than a decade now. He was trained on how to dress ulcers/wounds of leprosy patients. “When I had no leprosy, I used to swim in the river with my friends. We used to share soap. I used to visit my relatives and friends without hesitation. After I contracted leprosy, everything changed. I became lonely,” he says. But Sonam and Rajesh found comfort in each other's company and the centre made arrangements for their marriage, gave Rajesh a job and provided them with housing. 

Suresh Bhai Parmar (45), his wife Sharda, his elder daughter and class 11 student Bhavika, and younger daughter Bhumika, at their quarters, at Sahyog Kushtha Yagna Trust. His younger daughter is intellectually and physically challenged. He also has a son, who studies in class 10. Suresh contracted leprosy at 30, but assumed that the wound in his leg was due to some chemical reaction as he worked at a chemical factory. When it started to rot and smell bad, he visited a few doctors who suggested leg amputation. Then, someone told him about the Sahyog Trust. He, along with his wife and children, made their way to the place, after travelling from Halol, Gujarat with his badly wounded leg and spending the night at a bus stand. He was admitted as soon as he arrived here in the morning. The family has been living here since then, and both Suresh and his wife work here. 

Kavita (24) combs her daughter's hair. Her leprosy was diagnosed at an early stage when she was 16. She got timely reconstructive surgery, which saved her fingers. Her husband is also cured of leprosy now. 

This story is supported by a grant from Pulitzer Center on Crisis Reporting.