When Tufani Nayek was a little girl, she noticed a brown line forming on one of her hands. After some time had passed, she noticed the line started to look like a round-shaped mark.
However, neither she nor her family members paid much attention to it.
After marriage, Tufani's in-laws, observing the mark on her hand, took her to a dispensary situated near the tea garden for treatment.
Although the mark became lighter after treatment, none of them realized that Tufani was actually suffering from leprosy.
It was not until 2002 when her hands and legs started developing discoloured patches, and she lost sensation in those areas, that they finally decided to seek medical attention.
Her family took her to Moulvibazar Upazila Health Complex, and she was diagnosed with leprosy there. Before this, neither she nor her family had any idea about this disease.
Fifty-four-year-old Tufani Nayek's fingers on both hands have now become stiff and immobile. She frequently bleeds from under the soles of her feet.
What is leprosy?
According to the United States (US) Centers for Disease Control and Prevention, Hansen's disease, also known as leprosy, is an infection caused by slow-growing bacteria called Mycobacterium leprae.
It primarily affects the patient's nerves, skin, eyes, and the lining of the nose.
Some symptoms of leprosy include discolored patches on skin, thick, stiff or dry skin, painless ulcers on the soles of feet, painless swelling or lumps on the face or earlobes, and loss of eyebrows or eyelashes.
As people are not properly aware of the disease, many who live in villages believe the disease to be a curse or a hereditary disease.
Due to fear, superstition, and shame associated with the disease, people do not want to reveal their leprosy disease or take treatment for it.
Leprosy is a curable disease, and conventional medicines are used to treat it.
However, if the treatment is late, a patient's situation can deteriorate quickly.
Dhaka TribuneHence, as Tufani's condition remained untreated for years, she now struggles with basic tasks such as eating, walking, and even drinking water, and is dependent on her family members for assistance.
She told Dhaka Tribune that she even struggles to sleep at night due to unbearable pain in her body.
Currently, Tufani is under the supervision of a non-governmental organization (NGO) called HEED Bangladesh in Kamalganj upazila.
During his childhood, Rasu Munda, who is now 68 years old, was employed as a temporary worker in the tea garden located in Madhabpur upazila of Habiganj district.
After fulfilling his responsibilities as a permanent worker for several years, he is currently retired.
However, his retirement was not due to natural or age-related reasons, since in 2007-2008, Rasu Munda was affected by leprosy.
At first, he felt a sensation in his hands and feet, which he described as an “ant bite”, but later it spread to all the fingers of his hands.
Although he did not initially experience any pain, after almost two years his fingers began to curl and at that point, he came to know about leprosy affecting him.
He said that people, especially workers of the tea garden, started avoiding him after they learned Munda was affected by leprosy. Currently, over 20 workers in the same garden are affected by the same disease.
This is a common picture in tea gardens all over Bangladesh.
High number of leprosy patients
In Moulvibazar alone, some 240 people with leprosy are receiving treatment from HEED Bangladesh, according to records from January 1 to March 31 of the current year.
Leprosy patients are found in seven upazilas of the district. They are Juri, Kulaura, Barlekha, Moulvibazar Sadar, Rajnagar, Kamalganj and Sreemangal.
Although HEED Bangladesh says the total number of leprosy patients in these seven upazilas is 240, the Health Services Division has a record of 122 patients.
Meanwhile, 34 new patients were affected by the disease in the first three months of the current year.
Dhaka TribuneAccording to statistics provided by the Health Services Division, in 2021, a total of 2,872 new patients were diagnosed with the disease.
Paresh Debnath, project coordinator of HEED Bangladesh, said: "In the tea gardens of Moulvibazar district, two leprosy patients are identified out of every hundred workers on average.”
He said: "In 2022, there were 105 patients; 257 in 2021; 191 in 2020; 354 in 2019.
Leprosy endemic areas
Currently, nine districts of the country have been marked as "Leprosy Endemic Areas" or red zones for leprosy.
These areas include Moulvibazar, Dinajpur, Gaibandha, Nilphamari, Panchagarh, Rangpur, Thakurgaon, Joypurhat and Meherpur districts.
In the "Leprosy Endemic Areas" or red zones, more than one person out of every 20,000 people is a patient of leprosy.
This indicates that of the total nine red zones for leprosy in the country, Moulvibazar district is the most affected in terms of the spread of the disease.
Why is leprosy common among tea garden workers?
When asked why this disease is more common among tea garden workers, HEED Bangladesh Liaison Officer and Manager Nure Alam Siddique said: “Tea garden workers have to work in crowds. They lack adequate food, sanitation and healthcare facilities. So they are at a high risk of infection.”
Conventional medicine can stop the progress of the disease to a large extent. However, it cannot reverse the patient's disability, he added.
HEED Bangladesh has created an association called “Shajan”, consisting of all leprosy patients. Their task is to look after, track and provide medical kits to patients.
Swarnabala Singh, leader of the organization, has also been affected by this disease for a long time.
In addition to taking care of her family, husband, son, and daughter, she regularly goes to the nearby village and tea gardens to keep track of the leprosy patients.
Swarnabala Singh told Dhaka Tribune that she was affected by leprosy at a very young age. She noticed the first symptoms of the disease on her back.
Just like most patients, she and her family had no idea about the disease and hence they did not seek any medical treatment.
However, after she got married, her husband took her for treatment, and she was diagnosed with leprosy. And since then, she has been under treatment.
What is being done?
Moulvibazar civil surgeon Dr Chowdhury Jalal Uddin Morshed said: "Moulvibazar has the highest number of leprosy patients in the country. More than 90% of the patients live in the tea garden areas.”
He said: “Free medical services are being provided to leprosy patients detected all over the country, including Moulvibazar. However, there is no provision for rehabilitation of under-treated and undetected patients.”
The doctor noted that most of the patients are suffering from discrimination in society and their own families.