Myths and facts about leprosy

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Doris Obinna

The word leper was historically used to refer to someone who suffered from leprosy, a bacterial illness that affects the nerves, skin, and respiratory tract. Although it was originally used a medical term the Greek root is lepros, “scaly,” today the word leper is generally considered to be offensive.

Remember the biblical ten lepers who were made whole by Jesus. However, it was not their fault that they were lepers; whereas it was thought that most people contracted leprosy as a punishment from God for their sins. Lepers that were poor had to carry begging bowls. Societies considered them burdens because they could not work.

Globally, on Sunday, January 26, the World Leprosy Day (WLD) will be commemorated. The WLD is raising awareness of the disease that many people believe to be extinct.

The WLD is observed on the last Sunday of January each year. Established in 1954 by French philanthropist Raoul Follereau, it aims to raise awareness about leprosy (now called Hansen’s disease) and teach people about this ancient disease and that it is easily curable today. While rare in the United States, many people around the world continue to suffer from this curable disease due to lack of access to basic medical care and continued stigma surrounding the illness.

According to an expert, leprosy is an infectious disease caused by Mycobacterium leprae, an acid-fast, rod-shaped bacillus. The disease mainly affects the skin, the peripheral nerves, mucosa of the upper respiratory tract, and the eyes. Leprosy is curable and treatment in the early stages can prevent disability.

“Leprosy was renamed Hansen’s disease after Norwegian scientist Gerhard Henrik Armauer Hansen, who in 1873 discovered the slow-growing bacterium now known as Mycobacterium leprae as the cause of the illness. It is difficult to catch, and it can take many years to develop symptoms of the disease following an infection.

“However, people who catch the disease can be cured with antibiotics. Leprosy is an age-old disease, described in the literature of ancient civilizations. Throughout history, people afflicted have often been ostracized by their communities and families.”

Although leprosy was managed differently in the past, the first breakthrough occurred in the 1940s with the development of the medicine dapsone. The duration of treatment lasted many years, often a lifetime, making compliance difficult.

In the 1960s, M. leprae started to develop resistance to dapsone, the only known anti-leprosy medicine at that time. In the early 1960s, rifampicin and clofazimine were discovered and subsequently added to the treatment regimen, which was later labelled as multidrug therapy (MDT).

In 1981, World Health Organisation (WHO) recommended MDT. The currently recommended MDT regimen consists of medicines: dapsone, rifampicin and clofazimine. This treatment lasts for six months for pauci-bacillary and 12 months for multi-bacillary cases. MDT kills the pathogen and cures the patient.

Since 1995 WHO has provided MDT free of cost. Free MDT was initially funded by The Nippon Foundation, and since 2000 it is donated through an agreement with Novartis until at least 2020.

Elimination of leprosy as public health problem (defined as a registered prevalence of less than 1 case per 10 000 population) was achieved globally in 2000. More than 16 million leprosy patients have been treated with MDT over the past 20 years.

According to a Lagos doctor Sunday Olalekan, there are some common misconceptions about leprosy disease that continue to cause confusion and fuel stigma and discrimination. There are certain myths about leprosy.

However, he disagrees that the myths might not necessary count but the facts do. The thought or feeling that leprosy is very contagious (easy to catch) is a myth, but the fact is leprosy is hard to catch, and in fact, 95 per cent of adults cannot catch it because their immune system can fight off the bacteria that causes leprosy.

“Another myth is that leprosy causes the finger and toes to fall off. The fact remains that the digits do not “fall off” due to leprosy. The bacterium that causes leprosy attacks the nerves of the fingers and toes and causes them to become numb. Burns and cuts on numb parts may go unnoticed, which may lead to infection and permanent damage, and eventually the body may reabsorb the digit. This happens in advanced stages of untreated disease.

“Again, leprosy is a result of a sin or curse while the fact is leprosy is caused by the slow-growing bacterium Mycobacterium leprae and is not the result of one’s behavior or a curse.

“It is worthy to note that the two major classifications according to WHO are; paucibacillarey (PB) leprosy and multibacillary (MB) leprosy. However, within the WHO’s simplified classification there can be a fairly wide range of patient presentations. Paucibacillary leprosy. Two to five skin lesions with negative skin smear results at all sites,” he added.

 

Causes

Olalekan said, leprosy is caused mainly by Mycobacterium leprae, a rod-shaped slow-growing bacillus that is an obligate intracellular (only grows inside of certain human and animal cells) bacterium. M. leprae is termed an “acid fast” bacterium because of its chemical characteristics.

“When medical professionals use special stains for microscopic analysis, it stains red on a blue background due to mycolic acid content in its cell walls.”

Study shows that the Ziehl-Neelsen stain is an example of the special staining techniques used to view the acid-fast organisms under the microscope.

He continued: “Currently, the organisms cannot be cultured on artificial media. The bacteria take an extremely long time to reproduce inside of cells (about 12-14 days as compared to minutes to hours for most bacteria). The bacteria grow best at 80.9 F-86 F, so cooler areas of the body tend to develop the infection.

“The bacteria grow very well in the body’s macrophages (a type of immune system cell) and Schwann cells (cells that cover and protect nerve axons). M. leprae is genetically related to M. tuberculosis (the type of bacteria that cause tuberculosis) and other mycobacteria that infect humans. They are leprosy-related diseases.”

Explaining further, he said, as with malaria, patients with leprosy produce anti-endothelial antibodies (antibodies against the lining tissues of blood vessels), but the role of these antibodies in these diseases is still under investigation.

“In 2009, investigators discovered a new Mycobacterium species, M. lepromatosis, which causes diffuse disease (lepromatous leprosy). Considered one of the tropical diseases, this new species (determined by genetic analysis) appeared in patients located in Mexico and the Caribbean islands.”

Signs and symptoms

According to an expert, the early signs and symptoms of leprosy are very subtle and occur slowly (usually over years). The symptoms are similar to those that may occur with syphilis, tetanus, and leptospirosis.  The major signs and symptoms of leprosy are:

• Numbness (among the first symptoms)

• Loss of temperature sensation (among the first symptoms)

•Touch sensation reduced (among the first symptoms)

• Pins and needles sensations (among the first symptoms)

• Pain (joints)

• Deep pressure sensations are decreased or lost

• Nerve injury

• Weight loss

• Blisters and/or rashes

• Ulcers, relatively painless

• Skin lesions of hypopigmented macules (flat, pale areas of skin that lost color)

• Eye damage (dryness, reduced blinking)

• Large ulcerations (later symptoms and signs)

• Hair loss (for example, loss of eyebrows)

• Loss of digits (later symptoms and signs)

•  Facial disfigurement (for example, loss of nose) (later symptoms and signs)

• Erythema nodosum leprosum: tender skin nodules accompanied by other symptoms like fever, joint pain, neuritis and edema.

This long-term developing sequence of events begins and continues on the cooler areas of the body (for example, hands, feet, face, and knees).

Treatment

A research shows that antibiotics treat the majority of cases (mainly clinically diagnosed) of leprosy. The recommended antibiotics, their dosages, and length of time of administration are based on the form or classification of the disease and whether or not the patient is under medical supervision.

In general, two antibiotics (dapsone and rifampicin) treat paucibacillary leprosy, while multibacillary leprosy is treated with the same two plus a third antibiotic, clofazimine. Usually, medical professionals administer the antibiotics for at least six to 12 months or more to cure the disease.

Adding further, Olalekan said, antibiotics can treat paucibacillary leprosy with little or no residual effects on the patient. Multibacillary leprosy can be kept from advancing, and living M. leprae can be essentially eliminated from the person by antibiotics, but the damage done before antibiotics are administered is usually not reversible.

“Recently, the WHO suggested that single-dose treatment of patients with only one skin lesion with rifampicin, minocycline (Minocin), or ofloxacin (Floxin) is effective. Studies of other antibiotics are ongoing. Each patient, depending on the above criteria, has a schedule for their individual treatment, so a clinician knowledgeable about that patient’s initial diagnostic classification should plan a patient’s treatment schedules,” he noted.

Further research shows that medical professionals have used steroid medications to minimize pain and acute inflammation with leprosy; however, controlled trials showed no significant long-term effects on nerve damage.

The role for surgery in the treatment of leprosy occurs after a patient completes medical treatment (antibiotics) with negative skin smears (no detectable acid-fast bacilli) and is often only needed in advanced cases.

Medical professionals individualize surgery for each patient with the goal to attempt cosmetic improvements and, if possible, to restore limb function and some neural functions that were lost to the disease.

Special clinics run by the National Hansen’s Disease Program may treat some people in the United States.

“As is the case with many diseases, the lay literature contains home remedies. For example, purported home remedies include a paste made from the neem plant, Hydrocotyle, also known as Cantella asiatica, and even aromatherapy with frankincense. Patients should discuss any home remedies with their physician before using such methods; often there is little or no scientific data to uphold these cure claims,” said an expert.

Prevention

Most often, people usually ask if it is possible to prevent leprosy. According to an expert, prevention of contact with droplets from nasal and other secretions from patients with untreated M. leprae infection is currently the most effective way to avoid the disease.

“Treatment of patients with appropriate antibiotics stops the person from spreading the disease. People who live with individuals who have untreated leprosy are about eight times as likely to develop the disease, because investigators speculate that family members have close proximity to infectious droplets. Leprosy is not hereditary, but recent findings suggest susceptibility to the disease may have a genetic basis.

“Many people have exposures to leprosy throughout the world, but the disease in not highly contagious.”

Researchers however, suggest that most exposures result in no disease, and further studies suggest that susceptibility depends, in part, on a person’s genetic makeup. In the U.S., there are about 200-300 new cases diagnosed per year, with most coming from exposures during foreign travel. The majority of worldwide cases occur in the tropics or subtropics (for example, Brazil, India, and Indonesia).

The WHO reports about 500,000 to 700,000 new cases per year worldwide, with curing of about 14 million cases since 1985.

“There is no commercially available vaccine available to prevent leprosy. However, there are reports that using BCG vaccine alone, the BCG vaccine along with heat-killed M. leprae organisms, and other preparations may be protective, help to clear the infection or possibly shorten treatment. Except for BCG being obtainable in some countries, these other preparations are not readily available.

“Animals (chimpanzees, mangabey monkeys, and nine-banded armadillos) rarely transfer M. leprae to humans. Nonetheless, it is not advisable to handle such animals in the wild. These animals are a source for endemic infections,” said Olalekan.

Complications

The complications of leprosy depend on how quickly medical professionals diagnose and effectively treat the disease. Very few complications occur if physicians treat the disease early enough, but the following are complications that can occur when diagnosis and treatment is either delayed or started late in the disease process: sensory loss (usually begins in extremities), permanent nerve damage (usually in extremities), muscle weakness and progressive disfigurement (for example, eyebrows lost, disfigurement of the toes, fingers, and nose).

WHO response/targets

In 2016 WHO launched its “Global Leprosy Strategy 2016–2020: Accelerating towards a leprosy-free world” to reinvigorate efforts for leprosy control. The strategy focuses on children as well as on avoiding disabilities.

The Global Leprosy Strategy 2016‒2020 is structured around following 3 core pillars:

Pillar I: Strengthen government ownership, coordination and partnership

Key interventions

• Ensuring political commitment and adequate resources for leprosy programmes.

• Contributing to universal health coverage with a special focus on children, women and underserved populations including migrants and displaced people.

• Promoting partnerships with state and non-state actors and promoting intersectoral collaboration and partnerships at the international and national levels.

• Facilitating and conducting basic and operational research in all aspects of leprosy and maximize the evidence base to inform policies, strategies and activities.

•  Strengthening surveillance and health information systems for programme monitoring and evaluation (including geographical information systems).

Pillar II: Stop leprosy and its complications

Key interventions

•  Strengthening patient and community awareness of leprosy.

• Promoting early case detection through active case-finding (e.g. campaigns) in areas of higher endemicity and contact management.

• Ensuring prompt start of, and adherence to treatment, including working towards improved treatment regimens.

• Improving prevention and management of disabilities.

• Strengthening surveillance for antimicrobial resistance including laboratory network.

• Promoting innovative approaches for training, referrals, and sustaining expertise in leprosy, such as e-health.

• Promoting interventions for the prevention of infection and disease.

Pillar III: Stop discrimination and promote inclusion

• Promoting societal inclusion by addressing all forms of discrimination and stigma.

• Empowering persons affected by leprosy and strengthening their capacity to participate actively in leprosy services.

• Involving communities in actions for improvement of leprosy services.

• Promoting coalition-building among persons affected by leprosy and encourage the integration of these coalitions and/or their members with other community-based organizations.

• Promoting access to social and financial support services, for example to facilitate income generation, for persons affected by leprosy and their families.

• Supporting community-based rehabilitation for people with leprosy-related disabilities.

• Working towards abolishing discriminatory laws and promote policies facilitating inclusion of persons affected by leprosy.

Targets

• Zero disabilities among new paediatric patients.

• A grade-2 disability rate of less than 1 case per 1 million people.

• Zero countries with legislation allowing discrimination on basis of leprosy.

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