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C A M P A I G N

Few Facts about a Grossly Misunderstood Disease

Challenging Anti-Leprosy Legislation (CALL) Project
CALL for Change... thats what CALL Project is all about. Its a call to the conscience of the citizens of this country to end discrimination against people affected by leprosy and to advocate for repealing laws discriminating such people. CALL is about working for respecting the rights and restoring the dignity of people affected by leprosy.

LEPROSY

Stand Up For People Affected By Leprosy

Respect their rights... Restore their dignity

What is Leprosy?
Leprosy (also known as Hansens disease), is a chronic, infectious disease affecting the skin and peripheral nerves of infected individuals. It is caused by a bacillus (a rodshaped bacterium), Mycobacterium leprae. The first sign of leprosy is often a patch of skin that is lighter in colour than the surrounding skin, with loss of sensation in the area of the patch. In untreated cases of leprosy, nerve damage and other complications occur as the disease progresses. The numbness and loss of sensation due to nerve damage often leads to neglected injuries progressing to infected ulcers on the hands and feet, and then to the typical deformity. In many communities, this leads to stigma towards those affected and their family members, causing them to be excluded from the society. They are banned from attending family gettogethers, events and social and religious functions.

INDIA ACCOUNTS FOR THE WORLD!

55% CASES IN OF LEPROSY

Frequently Asked Questions about Leprosy
Q: Hasnt leprosy been eradicated yet? A: Sadly, no, although there has been a cure for leprosy for many years (Multi Drug Therapy, or MDT), currently there is no vaccine to prevent leprosy. Q: Is leprosy contagious? A: No, it is in fact the least contagious of all communicable diseases. It is much less contagious than the common cold or influenza. Most people are naturally immune to leprosy, but those who are malnourished, living in crowded and unsanitary conditions are vulnerable, as their immune system is less able to defend them from the leprosy bacillus, which causes the disease. Basically, leprosy is a disease linked to poverty. Q: Does leprosy spread through touch? A: No, casual contact with a person affected by leprosy does not seem to lead to infection. But, various studies suggest that living in an endemic area for several years may lead to infection. Q: Then, how does leprosy spread? A: The mechanism of infection is not yet fully understood, but it is generally thought to spread by droplets, through the upper respiratory tract. Q: Is leprosy hereditary? A: No, leprosy is not hereditary it is an infection. It might be transmitted from parents to children because of close contact, but not genetically. Q: Is leprosy the result of past sins or a curse? A: The ancient perception of leprosy, found in almost every religion, described the disease as a curse of God. Because of this, leprosy carries with it a stigma that adds terrible emotional trauma and extreme social exclusion of the people affected by the disease. But in reality, leprosy is a disease caused by a bacillus.

Incidence of Leprosy
The global registered prevalence of leprosy at the beginning of 2011 stood at 192,246 cases1, while the number of new leprosy cases detected globally, in 2010 (latest figures available) was 228,4742. This means globally, one person is diagnosed with leprosy every two minutes. It is a matter of great concern that India accounts for 55% of leprosy cases in the world3. A total of 127,000 new cases of leprosy were reported by the Government of India, in 2011-124. That is, 350 people are newly diagnosed with leprosy every day in India. However, research organizations, NGOs and some medical personnel are of the opinion that actual figures are much higher than the official figure5. There are about 12 million people affected by leprosy living in India. Most of them live in the 850 leprosy colonies spread throughout the country. In most of the cases, when people are diagnosed with leprosy, they would be driven away from their homes due to the stigma attached to leprosy and they settle down in leprosy colonies. They depend on begging for their survival.

1 PERSON ISWITH DIAGNOSED

1. 2. 3. 4. 5.

LEPROSY EVERY TWO MINUTES GLOBALLY!

Prevalence of leprosy - World Health Organization http://www.who.int/entity/lep/situation/prevalence/en/index.html Prevalence of leprosy - World Health Organization http://www.who.int/entity/lep/situation/prevalence/en/index.html Weekly epidemiological record - 2 September 2011, WHO, No. 36, 2011, 86, 389400, http://www.who.int/lep/situation/en/ NLEP Progress Report for the year 2011-12, Central Leprosy Division, Directorate General of Health Services, New Delhi. http://ibnlive.in.com/news/leprosy-cases-on-rise-in-urban-areas-inindia/225706-17.html, http://www.guardian.co.uk/lifeandstyle/2011/mar/24/leprosy-india-hidden-disease, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC557929/

Q: What are the earliest signs of leprosy? A: The most common earliest sign is usually a patch on the skin that may be slightly red, or lighter than normal skin. The patch may also have become numb and lost hair. Some of these patches may slowly increase in size and new patches may appear on other parts of the body. More often, they appear on the arms, legs or back. Sometimes, the only sign may be numbness and weakness in fingers or toes. Q: Can leprosy be cured? A: Yes, leprosy is a completely curable disease. An effective cure, called MDT, has been available, since 1981. This is a course of antibiotics to be taken for 6-12 months. 99% of leprosy bacteria in the body are killed within 24 hours of taking the first dose of MDT. Q: Where can one get MDT? A: MDT is available, free of cost, in government-run Primary Health Centres (PHCs) and also in hospitals run by NGOs working in the field of eliminating leprosy. Q: Can leprosy be prevented? A: So far, no specific preventive measures have been discovered. A vaccine is being researched and may be available in the future, but its usefulness may be limited. The best way of preventing the transmission of the disease within the community is to reduce infectivity as quickly as possible. For this, early diagnosis and uninterrupted treatment for the prescribed period are essential. Alleviating poverty is also one way of preventing leprosy, as it is a disease commonly affecting the poor. Q: Do fingers and toes fall off when someone gets leprosy? A: No, the bacteria attack nerve endings and destroy the bodys ability to feel pain and injury. Without the protective

PEOPLE ARE NEWLY DIAGNOSED WITH LEPROSY, IN INDIA. ACTUAL FIGURES ARE MUCH MORE!

sensation of pain, the affected persons injure themselves but neglect the injuries and the wounds can become infected, resulting in ulcers and tissue loss. Fingers and toes become shortened and deformed as the deeper tissues and bones become infected. Repeated injury and infection in the fingers or toes can cause deformity. Q: Why does leprosy only seem to affect hands, feet and eyes? A: The leprosy bacillus needs a cool environment, so it affects the surface parts of the body and the nerves in the eyes, feet and hands. Q: Is there any need to isolate leprosy patients? A: There is no need to isolate a person affected by leprosy, at any time, as it is not a highly infectious disease. It is not transmitted through touch or through sexual contact. Q: Can I live with a person infected with, or suffering from leprosy? A: Yes, the disease is only mildly infectious. However, it is mandatory that the person affected take MDT for the duration as prescribed by the health service provider.

350

AS PER OFFICIAL FIGURES, EVERY DAY

Q: What if I marry a person cured of leprosy or undergoing treatment? A: Your married life will be as normal as of any other couples. If the person is treated with required doses of MDT, he/ she is considered cured. Q: Can a leprosy patient be accepted by the society? A: Yes, the disease is least infectious, and curable with MDT. An infectious patient becomes non-infectious after taking the first dose of MDT. Leprosy is like any other disease; a person with leprosy is like a person with any other disease. Q: Can persons affected by leprosy be employed? A: Yes, a person affected by leprosy is not a threat to fellow citizens/employees, if he/she is taking or has completed treatment with MDT. Q: Is it right to use the word leper? A: No, for that would mean identifying a person by his or her disease. For centuries, leprosy has been viewed with horror and the word leper has come to mean outcast. The word leper reinforces the already strong stigma against leprosy and contributes to the heartbreaking ostracism people affected by leprosy face. Using the word leper today is considered inappropriate and an offence to the hundreds of thousands affected by leprosy. Instead, the following terms may be used: A person with leprosy An individual diagnosed with leprosy People affected by leprosy Q: What about human rights of people affected by leprosy? A: United Nations General Assembly unanimously adopted resolution A/HRC/15/30, in August 2010, approving

principles and guidelines for elimination of discrimination against people affected by leprosy and their family members. This resolution marked the culmination of several years of lobbying of UN institutions by groups and individuals devoted to focusing attention on an overlooked human rights issue: the social discrimination suffered by people diagnosed with leprosy - discrimination that usually continues towards them and their families even after they are cured. The stigma attached to leprosy has the power to ruin peoples lives in ways that no drug can cure. Educational opportunities, job prospects, married life, family relationships and community participation are all threatened by leprosy. In India there are many laws discriminating against people affected by leprosy, for example, leprosy is treated as a ground for divorce. Sadly, even medical professionals have been known to discriminate against leprosy patients.
Sources: ILEP, NLEP, WHO, Project Syndicate

Want to know more about leprosy? Please visit our website: www.tlmindia.org Published by: CALL Project The Leprosy Mission Trust India B-13 A, Institutional Area, Sector 62, NOIDA Uttar Pradesh 201 307, INDIA. Landline: 0120-4077200 Mobile: +91-9999795316 Email: call@tlmindia.org

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