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At 12pm one day, Mrs. Ngo Thi Soan, 80, scrupulously fixed nails to repair her old chicken coop. Her hands with small finger joints used a wooden stick. She has lived in the Qua Cam leprosy camp in the northern province of Bac Ninh since the age of 21.
She married her husband who was also a leprosy patient in this camp. They had one boy and one girl. After her husband passed away and her children had their own families, Mrs. Soan has lived alone in the leprosy camp.
She said that the disease was cured, but the sequelae still tortures her body each day. Her disabled hands and feet and her body are painful whenever the weather changes. She can sleep well only after taking pain-killer.
At the age of 80, with only one leg, which is very weak and two disabled hands, Mrs. Soan makes each movement. Her income comes from several chickens.
Her greatest fear is not illness but loneliness. Her oldest son died many years ago in an accident. Her daughter comes to visit occasionally. Mrs. Soan does not want to contact her daughter often to not bother her.
Mrs. Ngo Thi Soan, a leprosy patient at Qua Cam leprosy camp, is repairing her chicken coop. - Photo: Nguyen Lien
Nurse Nguyen Thi Xuan of the Qua Cam leprosy camp said that there are many patients who are in extremely pitiful circumstances. Many old people have no arms and legs, not even relatives. Their only wish is to return to their hometown to burn incense for their parents before leaving this world, but they cannot realize this simple wish. Their relatives worry that if they return, neighbors will know about their leprosy relatives and they will be shunned by the villagers.
There are patients who commit suicide as a rescue. Nurse Xuan saved a patient who had sunk half of the body in a pond or put his face in a jar of water, or hung himself in the mountain...
Dr. Nguyen Van Thuong, Director of the National Hospital of Dermatology, said that leprosy patients are "the most miserable of the miserable". They not only carry the burden of disfigurement but also poverty and loneliness.
According to statistics from the national leprosy prevention program, Vietnam has 36 leprosy treatment centers, and 15 leprosy villages with about 10,000 patients. Most of them are elderly, alone. The body has been cleared of leprosy bacteria, but they have to live with many underlying diseases and amputated limbs, and are unable to work.
“Leprosy patients really need special care. They can't survive if we stop caring for them," said Dr. Thuong.
Patients at Cam Thuy leprosy camp in Thanh Hoa Province. Photo: Nguyen Lien
Patients at the leprosy camp in Bac Ninh Province. Photo: Ta Quang
Leprosy patients need more help
The director of the National Hospital of Dermatology said that during the time without health insurance, leprosy patients were treated for free. The State maintained a national anti-leprosy network, and paid salaries for doctors and nurses, provided essential items for leprosy patients.
Later, leprosy patients are provided with health insurance, additional medicine to treat other diseases besides leprosy, sewing machines, orthopedic footwear by the Dermatology Hospital and non-governmental organizations and donors (leprosy patients often have many other diseases caused by leprosy).
But over the years, these sources have been cut.
The orientation of leprosy prevention activities in the coming period, according to Dr. Thuong, should be aimed at reducing stigma, in addition to rehabilitation for patients.
“The biggest worry of leprosy patients is the stigma of disease and discrimination. They want to really integrate into the community. We should have solutions to end or gradually reduce stigma, in addition to increasing help for patients in terms of treatment,” Dr. Thuong said.
Doctors of the National Hospital of Dermatology and Bac Ninh Dermatology Hospital hold a celebration for the New Year for patients at Qua Cam leprosy camp. - Photo: Nguyen Lien
A dangerous disease that is being forgotten
According to the national leprosy prevention program, each year Vietnam records 100-200 leprosy cases on average although the country announced it would be free of leprosy according to Vietnamese standards by the end of 2015.
Particularly at the National Hospital of Dermatology, the number of new cases discovered since 2018 is nearly 20, all with atypical clinical symptoms, and difficult to diagnose without experienced doctors and specialized support tests. Meanwhile, people's understanding about the disease is not insufficient.
“Leprosy still exists in the community. In the past, many people were frightened of it, but as the cases fell, they gradually forgot it. The disease will continue to last for many more years if it not detected early and intervened in time,” Dr. Nguyen Van Thuong said.
“The worst case is the number of drug-resistant leprosy patients continuing to increase, spreading bacteria to the community. It is very difficult to have drugs to treat and control the situation,” Dr. Thuong added.
Dr. Thuong said Vietnam should educate people about the importance of detecting the disease early and treating it promptly.
Hansen’s disease (known as leprosy) is an infection caused by slow-growing bacteria called Mycobacterium leprae. It can affect the nerves, skin, eyes, and lining of the nose (nasal mucosa). With early diagnosis and treatment, the disease can be cured. People with Hansen’s disease can continue to work and lead an active life during and after treatment.
Leprosy was once feared as a highly contagious and devastating disease, but now we know it doesn’t spread easily and treatment is very effective. However, if left untreated, nerve damage can result in the crippling of hands and feet, paralysis, and blindness.
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