Stories of love, hope and recovery among leprosy
patients, which transcend their battle against this <span style="background-image: initial; background-position: initial; background-size: initial; background-repeat: initial; background-attachment: initial; background-origin: initial; background-clip: initial; font-size: 20px;">debilitating and isolating&nbsp;disease Sabarkantha, Gujarat/Chandrapur, Maharashtra: India <a href="https://www.thehindu.com/news/national/india-accounts-for-52-of-worlds-new-leprosy-patients-says-health-minister/article66513013.ece">still</a>
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 <a href="https://www.who.int/india/news/detail/01-02-2022-supporting-leprosy-elimination-in-india">detection
rate</a> in the country is 4.56 per 10,000 population.&nbsp;<o:p></o:p>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. <o:p></o:p>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.&nbsp;<o:p></o:p>The real problem with leprosy is the discrimination that comes with it,
which the United Nations has labelled as a<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8929596/#:~:text=The%20United%20Nations%20Human%20Rights,their%20family%20members%E2%80%9D%20in%202008.">&nbsp;human
rights issue</a>. 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&nbsp;in Rajendra Nagar village in
Sabarkantha district of Gujarat and Maharogi Sewa Samiti in <span style="background-image: initial; background-position: initial; background-size: initial; background-repeat: initial; background-attachment: initial; background-origin: initial; background-clip: initial; font-size: 20px; background-color: rgb(255, 255, 255);">Anandwan village
in Maharashtra’s Chandrapur district become the last resort of leprosy-afflicted
or rehabilitated persons.&nbsp;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.&nbsp; <div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/2.jpg" id="1644527" title="" style="width: 100%;">(Left to right) Anjana Dhude, Indira Chaudhary and Janki Raut
arrived at different times at the hostel called ‘Apulki’ (house of affection).&nbsp;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.</div>&nbsp;<div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/3.jpg" id="1644528" title="" style="width: 100%;">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.&nbsp;</div>&nbsp;<div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/4.jpg" id="1644529" title="" style="width: 100%;">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.&nbsp;</div>&nbsp;<div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/5.jpg" id="1644530" title="" style="width: 100%;">Chandrakala Chatare (30), pictured with her husband Punjaram and
children Kiran (6) and
Kavita (5),&nbsp;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.&nbsp;</div>&nbsp;<div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/6.jpg" id="1644531" title="" style="width: 100%;">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.&nbsp;“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.&nbsp;</div>&nbsp;<div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/9.jpg" id="1644532" title="" style="width: 100%;">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.</div>&nbsp;<div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/13.jpg" id="1644533" title="" style="width: 100%;">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.</div> <div class="embed-container" align="center"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/14.jpg" id="1644534" title="" style="width: 100%;"></div><div class="embed-container" align="center"> </div><div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/7.jpg" id="1644535" title="" style="width: 100%;">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.&nbsp;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.&nbsp;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&nbsp;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.</div> <div class="embed-container" align="center"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/8.jpg" id="1644536" title="" style="width: 100%;"></div><div class="embed-container" align="center" style="line-height: 1;"> </div><div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/10.jpg" id="1644537" title="" style="width: 100%;">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.&nbsp;“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&nbsp;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.&nbsp;</div> <div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/11.jpg" id="1644538" title="" style="width: 100%;">Suresh Bhai Parmar (45), his wife Sharda, his elder daughter and class
11 student Bhavika,
and younger daughter Bhumika,&nbsp;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&nbsp;10.&nbsp;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 <span style="font-family: Charter; background-image: initial; background-position: initial; background-size: initial; background-repeat: initial; background-attachment: initial; background-origin: initial; background-clip: initial; font-size: 14px;">travelling from&nbsp;Halol, Gujarat&nbsp;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.&nbsp;</div>&nbsp;<div class="embed-container" align="center" style="line-height: 1;"><img src="https://assets.ramen.101reporters.com/inpic/2023/4/101RPT1614063/15.jpg" id="1644539" title="" style="width: 100%;">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.&nbsp;</div>&nbsp;This story is supported by a grant from
Pulitzer Center on Crisis Reporting.