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SUCCESS STORIES - Leprosy

Think before amputation...

Venkat (name changed), 28 years old, hails from Kadapa district, Andhra Pradesh. He was working in a cloth shop. In 2010, he was diagnosed with leprosy and he completed the full course of treatment. He also underwent two surgeries to correct his disabilities in the right hand at Damien Foundation Leprosy and TB Centre, Nellore. In 2014, he reported to the centre with a big ulcer in the dorsum of his left foot. He walked barefoot during the hot summer and developed blisters which later became infected and turned into ulcers.

At the time of admission he was severely malnourished. Also the ulcer was severely infected with foul smelling discharge. The medical team had a dilemma on whether he can be managed conservatively or needs an amputation. Finally the team decided to try to save his leg considering his young age. He was treated with antibiotics and was given protein rich diet. Surgical debridement and skin grafting was done later. His ulcers started healing fast with conservative line of treatment and finally the team could save the leg of this young man.


Leprosy has only crippled my feet not my spirit

Radha's (name changed) dreams could have been run down by Leprosy, which attached at a tender age of 12. She was diagnosed with Leprosy and deformity of the toes. She had to discontinue her studies as she was no longer able to ride her bicycle to school and there was no bus facility available from her village to her school.

Since then, she has been braving the odds, courtesy her will power and the support from DFIT. Currenty in her native village near Trichy, Radha is learning tailoring, dressmaking, embroidery and craft. She does not want her deformity to become her disability. She wants to be independent and work hard to support herself and her family.

 

 


The world is certainly round

It all started when Madhavan (name changed), 23 years, from a village in Madurai in Tamilnadu was 12 years of age. He can even remember the day. It was two days after the Tamil New Year. He noticed numbness on the back of his right forearm. He told his mother about it. She looked at it and said there was nothing. Three years passed. He noticed an increase in the area of numbness. He felt rather uneasy. He told his parents that there was something wrong. He was taken by his father to the family doctor who asked him to take green leafy vegetables, prescribed some vitamin B tablets and said that it was due to vitamin deficiency and he would be all right soon. Unfortunately, he was not. He noticed difficulty in holding objects in his right hand, buttoning his shirt and picking food from the plate. The right little and ring fingers became slightly crooked.

He went to a local skin specialist who noticed a skin patch on his back, prescribed treatment (three drugs called MDT - Multi Drug Therapy). He did not tell Madhavan what his disease was. He was asked to come every month to collect drugs from him. The next month when he went to see the doctor Madhavan asked him about his disease and the doctor told him it was leprosy. He was shocked. Did he hear someone say that it was curable? He did not believe it. But he continued the treatment for eight months. By then he had spent more than Rs.1000. Madhavan's uncle when he visited them told him to go to an NGO centre nearby. He followed his advice and he was again given the same treatment. After one month he developed red, painful skin patches all over the body and pain in his right elbow. He was now given another drug and was asked to do exercise for the hand. Eight painful months later when he went to the local primary health centre for seeking treatment for cough he met a leprosy worker who asked him to go to Holy Family Hansenorium, the NGO project at Fathimanagar.

He went there immediately (May 2008). He was told by the doctor that he was completely cured of the disease and therefore did not require any medical treatment for leprosy and sensory loss in the hands could not be recovered. The only recourse now was to correct the deformity through surgery. He was operated for his deformity in September. He is well on his way to complete recovery of the use of his hand. He admits that there is no discrimination by his friends in the college where he is studying Pharmacy. He proudly confesses that he has been able to refer a person from his village with skin patches and bent fingers and he is on treatment now. Madhavan may not be in high spirits, he is a happy man now.


Do you really want to listen to my story?

Mr. Palani, aged 41 years, from Karur in Tamilnadu, is a contended man now. After years of ceaseless struggle he has found a new meaning to his life thanks to timely help from Holy Family Hansenorium.

His troubles started when he noticed loss of sensation in his right index finger 11 years ago. He consulted a local doctor who told him that it was due to vitamin deficiency and asked him to take some pills. He took the drugs for two months and then stopped because he did not have money to continue the treatment. Two years later the sensory loss spread to the whole of his right hand. He went to another doctor who treated him for two weeks. Palani was not happy. His condition was becoming worse. He developed sensory loss in both the feet also. He found it difficult to walk. His fingers became crooked. His wife left him. He had to take care of his daughter and son. Life became miserable.

He found some job as a labourer at a construction site. The assistant to staff nurse in Government hospital noticed a big patch on his back while he was working. He was advised to go to Holy Family Hansenorium. He travelled 15 Kms on bicycle to reach the place. The Doctor examined him in detail and told him that he had leprosy. The world stood still for him. He could not understand why he got leprosy. He had not harmed anybody. The doctor asked him to stay at the hospital for at least 3 months. He refused. How could he? Who would take care of his children? He went to a Government general hospital and took treatment. He was irregular. He developed ulcer on his right middle finger and in his feet.

Now he decided to come to Holy Family Hansenorium. He left the kids with his sister and gave her some money to take care of his children before coming to the hospital. His condition improved, the ulcers healed. While at the hospital he came to know that his children were ill-treated by his sister. The daughter was forced to work as domestic help in a neighbour's house. He recounted his problems to the doctor who asked him to bring the children to the centre. He was given a job in the hospital and his children were admitted in the hostel inside the hospital campus. His wife was called to the centre and was counselled and she was convinced to live with Palani. She was also given a job. A house was constructed for them inside the campus. The family is together. They are happy. All is well that ends well.


In eternal search

The story of Rosy is the story of struggle against disease, discrimination and prejudice and of determination against all odds. Don't shed tears for her. She would be happy if you shed your prejudices and preconceived judgments!

Born into a lower middle class family with five siblings to compete for parental attention, love and affection came at a premium for Rosy. When she was denied tenderness from her drunken father and a frustrated and busy mother Rosy naturally turned to her grandfather (mother's father) who showered her with love. Tragedy struck her at the age of ten. Suddenly she found that she was not able to lift her feet due to paralysis and there were ulcers in her right foot. It was her grandfather who took her to a local doctor who said that it was due to disease of nerves and prescribed some drugs. When there was no improvement she was taken to a bone specialist by her grandfather on the advice of one of his friends. Even after 6 months of treatment which cost him Rs.4000 there was no improvement in her condition. The grandfather was severely rebuked by her father for wasting money and said that it was leprosy and was not curable. Treatment was stopped. She developed fever and her fingers in both hands became crooked. This time it was the turn of ayurvedic treatment. Her father started ill-treating her and her four sisters and brother avoided, ignored and rejected her. She had no one to turn to except her grandfather. One of their relatives during her visit to the family saw her and advised them to take her to Holy Family Hansenorium (HFH) in Fathima Nagar.

When she came to HFH she was frail, frustrated and deeply depressed with a forlorn look permanently etched on her face. Her grandfather when he knew that she had leprosy was devastated. He died one month after Rosy was admitted at HFH. It was an irreparable loss for Rosy. She was like an orphan, nobody to turn to and nobody to relate her woes to. Gradually, she started interacting with inmates of the hospital and found willing shoulder among the sisters there. Her deformities in the feet and hands were surgically corrected. She spent ten long years in the hospital. The Doctor and sisters in the hospital tried to get her married but no one was willing to have an alliance with her.

Rosy lost interest in marriage. She was taught sewing and was given a motorized sewing machine. She began earning some money. Her father never came to the hospital to see her. The only occasional visits from her family were from her mother. When her father died due to alcoholism and none of her sisters or brother was willing to stay with her, Rosy decided to leave the hospital and help her mother. She is not happy, but she is not dispirited. She is staying with her mother, earning a steady income for them by stitching clothes for neighbours and working in paddy field. She gets ulcers in her foot repeatedly in spite of her diligent self care. Her sisters and brother refuse to visit them; but the neighbours are kind to them. Rosy does not blame the family. She has come to accept everything as part of her life. For her the sewing machine is her companion, the mother is her solace. Everything else is meaningless to her.