Let us combat leprosy related disability

Through proper treatment, the severity of disability caused by leprosy can be reduced, restoring the victims’ capacity for work

Though leprosy is a health problem in our country, many affected people along with their family members are facing discrimination in different aspects of their lives due to stigma over the disease, resulting in violation of their human rights. Many leprosy victims are being disabled due to the disease. Disability, caused by lack of proper facility for managing the disease’s complications, is adding fuel to the misunderstanding.          

It is not possible to separate the issue of complications from natural characteristic of leprosy. Disability is the inevitable consequence of leprosy. There are mainly two types of complications in leprosy. One is reaction while another is deformity or disability.

Leprosy is a slow growing disease whose symptoms appear gradually. Instead of the slow process, if its symptoms suddenly create urgent situation it is called leprosy-related reaction. Such reaction may occur before, during or even several years after completion of its treatment. The reaction happens because of germ of leprosy disease, not for its medicine.                       

Leprosy is a chronic infection caused by the bacteria Mycobacterium leprae and Mycobacterium- lepromatosis. In the 1980s, an effective cure for leprosy was developed and now it is completely curable through multi-drug therapy (MDT).

If left untreated, leprosy can cause permanent damage to the nerves in the fingers, toes, hands and feet. This may affect a person’s ability to feel pain and temperature in these areas of the body. When you can’t feel your fingers or toes, you may accidentally burn, cut or hurt yourself. Repeated injuries and nerve damage can cause muscle weakness, deformities and even the loss of fingers and toes. Untreated leprosy can also cause swelling, and skin sores and lesions that are more severe.

The complications of leprosy depend on how quickly the disease is diagnosed and effectively treated. Very few complications occur if the disease is treated early enough. Leprosy reactions must be treated in a timely and effective manner to prevent nerve compression and resulting sensory loss, which inevitably leads to mutilating deformity. The reactions involve increased pain, inflammation, and infiltration. All of these should be managed to prevent nerve damage.

The following are the complications:

Blindness, erectile dysfunction and infertility in men, disfiguration of the face (including permanent swelling, bumps and lumps), kidney failure, frequent nosebleeds and constant stuffiness, inability to close the eyelids, cataract (secondary eye problems), Keratitis, permanent nerve damage outside of the brain and spinal cord (usually in extremities), muscle weakness (claw-like hands, finger, foot drop, facial palsy), loss of eyebrows, ulceration and mutilation, Iridocyclitis.

According to National Leprosy Elimination Programme (NLEP) sources, some 2,16,520 people were diagnosed with leprosy from 1985 to 2016 in our country. Of them, about 35,000 turned disabled due to their failure of taking timely and proper treatment.            

About 4,000 leprosy patients take specialised health services from leprosy hospitals in the country in a year. They get 80 percent services from the hospitals run by NGOs while the rest 20 percent provided by three government-run hospitals in Dhaka, Sylhet and Nilphamari.  

Scope for services of management of leprosy complications is inadequate in our country. Though most of such services are provided by the NGO-run hospitals, shortage of funds is hampering their services. A number of NGOs providing such services have closed their hospitals due to financial constraints. Hence, it is urgent for the government to take steps for providing the services.

If the steps are not taken by the government, the situation may further worsen. Lack of facilities for the management may increase the number of people with disability. More disability means more burdens not only for the respective families but also for the state. Hence, urgent government action is warranted.

According to The Leprosy Mission International-Bangladesh (TLMI-B), if the management issue is disregarded, there will be far-reaching impacts. Rate of disability, caused by leprosy, will increase, which will increase negative attitude about leprosy in our society. Then the false concept that leprosy is not curable will be further embedded into people’s minds. The lives of the helpless affected people will further be full of sufferings. So, there is no scope of neglecting the matter.         

The government can strengthen its three leprosy hospitals with necessary manpower, equipment and budget to handle the situation. It would be far better if all the medical college hospitals across the country are properly equipped to deal with the situation. If it is done, then leprosy affected people will get their necessary services near their localities.

Three government-run leprosy hospitals are located at three different areas of the country. Affected people, especially poor living across the country, may find it tough or inconvenient to travel long distance for availing of treatment. So, it would be far better if arrangement is made to equip all those hospitals for dealing with leprosy complications so that the country’s people may get the facilities easily near their localities.            

The government has necessary infrastructure and other facilities for providing the services. What the government can do now is to take necessary steps for enhancing the skill of surgeons at the medical college hospitals. Then they will be able to provide the services for the complications.                        

Besides, there should be facility of reaction neuritis and ulcer care in every upazila health complex. Medical officers at upazila level should be imparted training on complications management.

It is needed to impart training to TB & Leprosy Control Assistants (TLCAs) and Programme Organisers (POs) on the management so that they can acquire skill to identify the complications at initial stage and, if necessary, they can refer it to suitable place for treatment.         

Through proper treatment, the severity of disability, caused by leprosy, can be reduced restoring the victims’ capacity for work. Hence, it is essential to arrange the specialized leprosy services. Ensuring the facility can also halt further deterioration of the condition of those already disabled.     

Not only does a leprosy-related disability limit the activities of the affected people in their daily lives, they also bring about stigma and exclusion from their communities. The affected people and their kin are neglected by society due to its outdated image of being contagious and disfiguring.

While adopting principles for ending discrimination against leprosy victims on December 2010, the UN General Assembly called on governments to consider the principles while formulating policies concerning the victims. The principles aimed at providing early detection programmes and ensuring prompt treatment of leprosy, including treatment for any reactions and nerve damage that may occur.   Healthcare is a basic necessity of a life and fundamental right of citizen. Article 32 of our Constitution called for ensuring right to life such as healthcare and medicine.

Our Health Policy also confirms that every citizen has the basic right to adequate healthcare. The goal of the policy is to make necessary medical utilities reach people of all strata as per Article 15(A), and develop the health status of people as per Article 18(A) of the Constitution.

So, the state and the government are constitutionally obliged to ensure healthcare for its citizens.

Let us take necessary steps for decreasing prevalence of the disability by ensuring quality healthcare. Together, we can work to see reduced prevalence rates of leprosy, associated disability and stigma in the country.

The writer is a social activist and freelancer. He can be reached at [email protected]

Let us combat leprosy related disability

Through proper treatment, the severity of disability caused by leprosy can be reduced, restoring the victims capacity for work

Though leprosy is a health problem in our country, many affected people along with their family members are facing discrimination in different aspects of their lives due to stigma over the disease, resulting in violation of their human rights. Many leprosy victims are being disabled due to the disease. Disability, caused by lack of proper facility for managing the diseases complications, is adding fuel to the misunderstanding. It is not possible to separate the issue of complications from natural characteristic of leprosy. Disability is the inevitable consequence of leprosy. There are mainly two types of complications in leprosy. One is reaction while another is deformity or disability. Leprosy is a slow growing disease whose symptoms appear gradually. Instead of the slow process, if its symptoms suddenly create urgent situation it is called leprosy-related reaction. Such reaction may occur before, during or even several years after completion of its treatment. The reaction happens because of germ of leprosy disease, not for its medicine. Leprosy is a chronic infection caused by the bacteria Mycobacterium leprae and Mycobacterium- lepromatosis. In the 1980s, an effective cure for leprosy was developed and now it is completely curable through multi-drug therapy (MDT). If left untreated, leprosy can cause permanent damage to the nerves in the fingers, toes, hands and feet. This may affect a persons ability to feel pain and temperature in these areas of the body. When you cant feel your fingers or toes, you may accidentally burn, cut or hurt yourself. Repeated injuries and nerve damage can cause muscle weakness, deformities and even the loss of fingers and toes. Untreated leprosy can also cause swelling, and skin sores and lesions that are more severe. The complications of leprosy depend on how quickly the disease is diagnosed and effectively treated. Very few complications occur if the disease is treated early enough. Leprosy reactions must be treated in a timely and effective manner to prevent nerve compression and resulting sensory loss, which inevitably leads to mutilating deformity. The reactions involve increased pain, inflammation, and infiltration. All of these should be managed to prevent nerve damage. The following are the complications: Blindness, erectile dysfunction and infertility in men, disfiguration of the face (including permanent swelling, bumps and lumps), kidney failure, frequent nosebleeds and constant stuffiness, inability to close the eyelids, cataract (secondary eye problems), Keratitis, permanent nerve damage outside of the brain and spinal cord (usually in extremities), muscle weakness (claw-like hands, finger, foot drop, facial palsy), loss of eyebrows, ulceration and mutilation, Iridocyclitis. According to National Leprosy Elimination Programme (NLEP) sources, some 2,16,520 people were diagnosed with leprosy from 1985 to 2016 in our country. Of them, about 35,000 turned disabled due to their failure of taking timely and proper treatment. About 4,000 leprosy patients take specialised health services from leprosy hospitals in the country in a year. They get 80 percent services from the hospitals run by NGOs while the rest 20 percent provided by three government-run hospitals in Dhaka, Sylhet and Nilphamari. Scope for services of management of leprosy complications is inadequate in our country. Though most of such services are provided by the NGO-run hospitals, shortage of funds is hampering their services. A number of NGOs providing such services have closed their hospitals due to financial constraints. Hence, it is urgent for the government to take steps for providing the services. If the steps are not taken by the government, the situation may further worsen. Lack of facilities for the management may increase the number of people with disability. More disability means more burdens not only for the respective families but also for the state. Hence, urgent government action is warranted. According to The Leprosy Mission International-Bangladesh (TLMI-B), if the management issue is disregarded, there will be far-reaching impacts. Rate of disability, caused by leprosy, will increase, which will increase negative attitude about leprosy in our society. Then the false concept that leprosy is not curable will be further embedded into peoples minds. The lives of the helpless affected people will further be full of sufferings. So, there is no scope of neglecting the matter. The government can strengthen its three leprosy hospitals with necessary manpower, equipment and budget to handle the situation. It would be far better if all the medical college hospitals across the country are properly equipped to deal with the situation. If it is done, then leprosy affected people will get their necessary services near their localities. Three government-run leprosy hospitals are located at three different areas of the country. Affected people, especially poor living across the country, may find it tough or inconvenient to travel long distance for availing of treatment. So, it would be far better if arrangement is made to equip all those hospitals for dealing with leprosy complications so that the countrys people may get the facilities easily near their localities. The government has necessary infrastructure and other facilities for providing the services. What the government can do now is to take necessary steps for enhancing the skill of surgeons at the medical college hospitals. Then they will be able to provide the services for the complications. Besides, there should be facility of reaction neuritis and ulcer care in every upazila health complex. Medical officers at upazila level should be imparted training on complications management. It is needed to impart training to TB Leprosy Control Assistants (TLCAs) and Programme Organisers (POs) on the management so that they can acquire skill to identify the complications at initial stage and, if necessary, they can refer it to suitable place for treatment. Through proper treatment, the severity of disability, caused by leprosy, can be reduced restoring the victims capacity for work. Hence, it is essential to arrange the specialized leprosy services. Ensuring the facility can also halt further deterioration of the condition of those already disabled. Not only does a leprosy-related disability limit the activities of the affected people in their daily lives, they also bring about stigma and exclusion from their communities. The affected people and their kin are neglected by society due to its outdated image of being contagious and disfiguring. While adopting principles for ending discrimination against leprosy victims on December 2010, the UN General Assembly called on governments to consider the principles while formulating policies concerning the victims. The principles aimed at providing early detection programmes and ensuring prompt treatment of leprosy, including treatment for any reactions and nerve damage that may occur. Healthcare is a basic necessity of a life and fundamental right of citizen. Article 32 of our Constitution called for ensuring right to life such as healthcare and medicine. Our Health Policy also confirms that every citizen has the basic right to adequate healthcare. The goal of the policy is to make necessary medical utilities reach people of all strata as per Article 15(A), and develop the health status of people as per Article 18(A) of the Constitution. So, the state and the government are constitutionally obliged to ensure healthcare for its citizens. Let us take necessary steps for decreasing prevalence of the disability by ensuring quality healthcare. Together, we can work to see reduced prevalence rates of leprosy, associated disability and stigma in the country. The writer is a social activist and freelancer. He can be reached at [email protected]