No longer outcasts

No longer outcast

People with leprosy used to be feared and shunned by society but this is no longer the situation now. Modern medicine has given them a new lease on life.

For centuries, people were terrified of leprosy. Those afflicted with the disease were shunned, treated with the utmost contempt and became the outcasts of society. Doctors were baffled by it and were worried that it would become widespread, as it was considered to be highly contagious, capable of spreading easily from one person to another. Their infected skin and disfigurement put fear in the hearts of family members and the public. As there was no effective treatment at that time, leprosy sufferers were pushed to live in segregated colonies far away from civilisation; deep in the jungle or on isolated islands to contain the spread of the disease.

Malaysia was not spared from this situation. The history of leprosy in our country dates back to almost 300 years ago. Early immigrants probably brought the disease with them to our shores. Victims of this disease were subject to horrible disfigurement and a life without hope. They were isolated in remote camps in the forests of Pulau Jerjak, Pulau Pangkor, Tampoi, Setapak, Kota Baru, and the leper asylum on Jalan Tun Abdul Razak (previously known as Circular Road) in Kuala Lumpur. Patients from these camps were later transferred to the Sungai Buloh Leprosy Settlement when it was established in the 1930s. This leprosarium is now known as the National Leprosy Control Centre.

What is leprosy?

Leprosy is a chronic infectious disease caused by the Myobacterium Leprae Bacteria, which infects the skin and peripheral nerves. Also known as Hansen’s disease, it is not hereditary.

The bacteria multiply slowly and can have a long incubation period of up to two to five years or more before symptoms appear. Myobacterium leprae can infect the eyes, upper respiratory tract, lining of the nose and the testes. If left untreated, it can lead to severe disability and even blindness.

Leprosy is an airborne disease.  It can be spread when an individual inhales the bacteria filled droplets released into the air by an infected person during sneezing or coughing. Leprosy is not spread through contact with ulcerations on the limbs of leprosy patients. Although the disease is airborne, it’s not easy to develop leprosy. More than 95% of people are immune to the bacteria, particularly those living in the endemic areas of the disease.

Does leprosy still exist?

You may be surprised to know that leprosy still occurs in more than 100 countries worldwide especially in less developed countries.

Lepra, a UK registered international charity active in India, Bangladesh and Mozambique, said that there were 210,758 people in the world diagnosed with leprosy in 2015. Out of this, 18,796 of the new leprosy cases were children. In India, 11,389 children were affected, while there were 327 children in Bangladesh and 116 in Mozambique.

According to Dr Chan Lee Chin, Hon Treasurer Persatuan Dermatologi Malaysia, our country achieved the target of elimination set by the World Health Organisation (WHO) in 1994. According to the WHO, leprosy is considered eliminated when a country attains the targeted prevalence level of one in 10,000 population for every local population cluster. Malaysia is still home to pockets of infection in areas like Sabah, Pahang, Selangor, Sarawak, etc. “There’s an average of 300-350 new cases diagnosed each year. In 2012 and 2013, there were 336 and 306 new cases diagnosed in Malaysia. We are still getting new leprosy cases among our local patients, aborigines and also among immigrants and foreign workers.”

How does one identify leprosy?

How would one suspect someone of having leprosy?  Leprosy can affect the skin and peripheral nerves. It may present with one or more skin patches with or without loss of sensation over the lesion(s). When the peripheral nerves are involved and damaged, patients may also feel weakness, numbness and loss of sensation in their hands and feet. This means that patients will not draw away from hot or sharp objects as they cannot feel these. Any burn or wound may become infected and this in turn may result in deformities or in patients losing their fingers or toes. If left untreated, paralysis of facial nerves can also lead to loss of the blinking reflex or dryness and ulceration of the eye. It can also result in blindness.

However, Chan says there’s no need for alarm as the disease is being contained. Since the 1940s, scientists had been producing effective treatments. The numbers of cases are dropping yearly and have decreased tremendously following the introduction of a multidrug therapy (MDT) by the World Health Organisation in 1985.

“Usually people at risk are close contacts staying in the same household, sharing the same kitchen with the leprosy infected patients. For treatment purposes, leprosy patients are grouped into two broad categories; paucibacillary (no bacilli detected) and multibacillary (bacilli detected) leprosy based on a slit skin smear done on a patient’s earlobes and skin lesions. Patients who are having multibacillary leprosy are considered contagious.

“Once you are started on treatment, namely multidrug therapy consisting of oral rifampicin, clofazimine and dapsone; you are rendered non-infectious. One dose of oral rifampicin 600mg is able to kill 99.99% of the bacilli load. Thus isolation or segregation is not needed when the patient is undergoing treatment and also when he has completed treatment. They can stay with their family members as usual and there’s no need for worries,” said Chan.

“The Sungai Buloh National Leprosy Control Centre no longer admits new patients since the abolishment of the Leper Enactment Act in the late 1980s. The patients left in the centre are those who opted to stay back due to their own preference or they have no place to go home to.”

Unfortunately, due to the lack of awareness and the stigma that comes with the disease, people infected by the disease may delay in seeking help and if diagnosis or treatment is delayed then devastating disabilities will occur.

“The main message on leprosy is that this disease can be treated effectively with MDT, thus isolation is not required. Community members need to understand that leprosy is a simple curable disease. The negative image and stigma associated with leprosy should be changed and no individual should suffer from discrimination due to present or past leprosy,” concluded Chan.

Fast facts on leprosy

  • Leprosy is a bacterial disease of the skin and nerves.
  • It is completely curable.
  • It causes patches of anaesthesia, which means that people suffering from this disease cannot feel pain in the affected areas of their body.
  • It effects between 200,000 – 250,000 people each year.
  • Experts believe there are three million undiagnosed cases in the world today.
  • An estimated four million people live with the physical consequences of the disease.
  • The last Sunday in January each year marks World Leprosy Day.

World Leprosy Day, which started since 1954, is commemorated on 29 January this year.

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