Case Studies


The case studies below provide glimpses into the lives of some of our patients. Sadly, their stories are by no means unique, they are repeated daily in villages throughout Nepal.

Sushila Rajbansi – ‘A chance to sit and eat with others’

written by Victoria Elliot, Podiatrist at LLSC in January 2006

Sushila, is a 70-year-old lady, who tells a sad story and one that challenges our rehabilitation skills to the maximum. Her ethnic caste is not a common one; Jhapa district has only 58,024
Rajbansi people. (CBS 03)

She is from Itta-Bhatta in Jhapa. The Rajbansi people have their own language and customs. The Rajbansi castes are farmers, well known for building houses.

As a young child, the older of two girls, she married young at around ten years old. Her mother was already dead and just after her marriage, her father also died. Child brides were not uncommon in that time.

According to the custom she moved to her husband's family home and gave birth to a son and a daughter. Sushila recalls this as the happiest time of her life. Marriage and having children are vital social norms to fit into a south-eastern Nepali village.

Her main role was cooking, cleaning and helping on the family farm. Most households with small holdings have goats and cows.

Sadly, both her children died and at that time she discovered a large patch on her left arm.

By the time the leprosy bacteria was discovered her feet had already started to ulcerate.

The loss of feeling in the feet meant that she lost her toes. On seeing Sushila’s wounds, her husband built a separate tin-roofed, one-room building to house Sushila. Her husband then took a second wife, to bear him children. At first her husband continued to feed her but she suffered from leprosy alone.

The progression of leprosy left Sushila with no fingers and an amputated right leg. Her left leg has a stump foot.

It is difficult to determine when it happened, but her husband also died, leaving Sushila without help. The second wife’s son was too young to help at that stage.

Sushila’s younger sister had previously died during child birth (her son lived), but currently her nephew is not in touch with Sushila. Her nephew also lost a baby girl - Nepal is a country with maternity healthcare problems.

At the height of her sadness Sushila cried for ten months and worried about her future as she had no family left to feed her and look after her.

She became an outcast, going from house to house begging for whatever food they could give her. By that time she was becoming older. The locals took pity on her and told her stepson to feed her. He was shamed into giving her food.

She came to Lalgadh after attending a field camp in her area. Eileen Didi referred her to the Centre at Lalgadh to receive medical care of her wounds.

Six years earlier, in 2000, her wounds had become serious. A series of minor operations did not improve the growing ulcer on the right leg stump. In 2005 at The Leprosy Mission hospital she had had further treatment when her stump was cut back. Although now healed Sushila cannot use a false limb. She uses an adapted wheel chair for mobility, but does not go far for fear of falling.

Currently she is staying in the female ward, recently having arrived back from Kathmandu (TLM).

She was very happy for her story to be written. When asked what her favourite food is and her favourite colour, she does not know. "All is OK", she replies. When asked "What do you want to do in the future?" Her answer is: "Sit and eat with others".

To ‘sit and eat with others’ is not a big request in our eyes, but after being shunned by the few people she has left, it is a good reason to want that. Her story so reflects the stigma experienced by a leprosy-affected person, and by a woman unable to bear a healthy son. A village man in rural Nepal may still take a second wife, and put away the first. The importance of family is paramount in this society, hence Sushila crying for ten months.

Recently her step-son was contacted to arrange a meeting. It is hoped to be able plan to meet Sushila's needs. She needs food prepared for her, as her mitten hands cannot hold anything. She has a leather strap with a pocket for a spoon.

This is just one case, where Lalgadh services are essential. Though challenging it is hoped that Sushila will be given the chance to "sit and eat with her people again".

Today, despite what this lady has lived through, she smiles as I enter the ward, and I feel I could never understand the level of suffering she has been through.

Tej Kumari

Tej Kumari Grew up in Southeast Nepal and married young.  Many years ago whilst they were living in Sindhuli, her husband died leaving her childless and therefore without support.  Tej Kumari contracted leprosy soon after and returned to her village to beg.  She was living in a small hut and some local people were feeding her when some medical staff discovered her in 1971.  Although she has relatives in Lalgadh village  they had disowned her and she had no one else to look after her.

When she was diagnosed with Leprosy she went to Anandaban Leprosy Hospital in Kathmandu for treatment and management of her ulcer problem.  Due to late diagnosis of the disease Tej Kumari had lost her fingers and toes and is now in a critical condition because she has got bilateral lagophthalmos. This makes it very difficult for her to see properly. She has been suffering from these disabilities for the last 15 years.

Since her referral to Lalgadh Hospital a couple of years ago we have been able to supply:

  • A tiled roof house with 3 rooms including a toilet and bathroom.
  • A drinking water pipe has been connected.
  • Electricity has been installed.
  • A set of bedding and utensils.
  • A long term subsistence allowance of 500 Nepali Rupees a month.
  • Free medical care.
  • Monthly monitoring and supervision to check her health.

The community were sceptical at first about accepting Tej Kumari back and LLSC staff had to convince the leaders over a period of time before she could be resettled into Bhiman village.  A women political leader and a village health volunteer were instrumental in bringing about this change.  They were also positive and helpful to Tej Kumari, for example when she was low on food they also provided for her.

Tej Kumari also receives a monthly subsistence of 150 Nepali Rupees a month from the local village community development officer.

Jaya Kumar Subba

Victimised......

After being treated for leprosy, Jaya Kumar Trained in leatherwork. Jaya Kumar is a devout Christian who chooses to make Bible bags rather than any other Leather products.   TLM (The Leprosy Mission)  placed an order for bags early last year.  Then,  in September, they received terrible news form Kamal Shrestha at NLT:

'Jaya Kumar Subba came to see me today.  He was saying to me that the demonstrators had destroyed his leather, sewing machine and remaining materials last week.....'

....but all was not lost .......

'so I have asked him to come to NLT workshop to make samples for you.  Also, we have offered to provide him with the materials he needs, which we have in stock.  He seems happy about this.'

NLT  helped Jaya to source the leather and Dhaka cloth himself, so that he could fulfill the TLM order.  Each Bible bag is therefore ral evidence of co-operation and partnership in action.

Chimsi

At 6 years old, Chimsi Nepali, and her younger brother Gore aged 3 years of Gorkha, West Nepal, didn't understand why their mother  committed suicide in the Darouti river.  Their poor mother Putali, who had leprosy, had experienced severe social rejection and hatred from her own people.  Her four children were left on their own.

Chimsi was badly treated by her stepmother, then her uncle cared for her for 8 years.  She developed leprosy  herself at the age of 16. Her fingers began to feel strange, then later senseless, slowly bending and later breaking into pieces.  These terrifying physical changes brought a big shadow into her life, extinguishing the light of hope.  Chimsi had become an unwanted person in society. She also was treated very badly by, and was separated by her community.

Chimsi's brother brought her to Anandaban Leprosy Hospital, where he also had had leprosy treatment. She was treated well and cured of leprosy after a couple of years. Fearing loneliness and poverty, she refused to go home from the hospital; she was given a laundry job. For four years she worked hard washing patients' clothes and cleaning; but soon she had to leave the hospital.

In 1976 at age 28 Chimsi was introduced to NLT by its founder, Eileen Lodge, and was given a cleaning job.  she got married at age 29 to a leprosy-affected man called Makuram Nepali, who also working with NLT.  Her life changed and her burdens decreased. They had both been healed physically and spiritually.  So they are thankful to God first and then to NLT for their rehabilitation.

Today Chimsi is 48 years old and has worked for NLT for many years; but she still has the same dedication, energy and smile on her face. Chimsi is a real inspiration, whose smile gives encouragement to many people.

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