Leprosy 101

Living in a Modern World with
the Stigma of an Ancient Disease
Hannah Tempest
December 2009

Leprosy is a disease we read about in the Bible. However, this ancient
disease still affects many countries of the world. Leprosy is an infectious
disease caused by the organism Mycobacterium leprae. Leprosy, or
Hansen’s disease, is mildly contagious and is characterized by nerve
damage, skin disfigurement, and body sores due to the lack of nerves.
This disease primarily affects the poorest people of the world and is
found predominantly in India, South America, and Africa.

According to an article written in the “Voice Of American News”, at the
beginning of 2009, the World Health Organization reported 213,000 new
cases of leprosy in 21 countries. Leprosy is alive and active in the world
today despite the efforts and predictions for the elimination of the
disease by the 21st century. One of the greatest challenges that leprosy
patients experience is the stigma associated with the disease. Efforts to
eliminate the prejudice should include, education, generalized treatment,
and socialization in order to minimize the suffering of leprosy patients.

Leprosy was first discovered to be an infectious disease in 1873 by
Doctor Gerhard Henrik Armauer Hansen a Norwegian researcher. Upon
Hansen’s discovery, leprosy was renamed Hansen’s disease, but the more
common name still remains leprosy. Prior to Hansen’s discovery, leprosy
was thought to be hereditary or a curse from God for ones sins. A
prejudice against leprosy patients began long ago but fear, and ignorance
escalated the issues surrounding the disease creating a harsh stigma
associated with leprosy. The appearance and fear of leprosy patients
pushed people to extreme measures throughout history, especially at the
turn of the twentieth century.

Globally, extreme measures were taken to ensure that lepers were cast
out and alienated from society. Across the world, governments
established islands for leprosy colonies because “complete physical
separation and confinement of leprosy sufferers within the physical
space of an island was believed necessary” (Buckingham, 2). In 1898,
Bangladesh and India enacted the Lepers Act, which stated:

The Government may, by notification in the official Gazette, appoint
any place to be a leper asylum if it is satisfied that adequate
arrangements have been made or will be made for the
accommodation and medical treatment of lepers therein, and may,
by a like notification, specify the local areas from which lepers may
be sent to such asylum.

Not only did the Lepers Act allow for leper colonies, it also provided basic
instructions for the arrest of lepers within the country. Due to the
ignorance and fear of others “lepers are stigmatized socially, leading to
loss of employment, alienation from family and community, and
ultimately confinement in a leprosarium, they often deny infection or
evade treatment as long as possible, thus ensuring transmission of the
disease to others” (Carmichael, 1). This created a stigma and prejudice
that has grown for years. Now, struggling to eliminate the prejudice
proves a more difficult task than eliminating the disease. The stigma
associated with leprosy has a strong impact on the world today, despite
the fact that with proper drug treatment leprosy is curable.

Though leprosy is now a curable disease, it will take much more to cure
the stigma and prejudice surrounding the disease. Even today, the
majority of cases remain undiagnosed because of the fear of ostracism by
family and friends. This stigma most obviously affects areas where class
and rank create an issue, but prejudices also exist in modern industrial
countries like the U.S. In an article published by the New York Times
titled “Leprosy, a Synonym for a Stigma, Returns”, author Sharon Lerner
interviews leprosy patients from the New York area. Most New York
patients interviewed feared telling family and friends of their Hansen’s
disease diagnosis:

A Queens man tells his friends that the bumpy patches on his arms
are allergies, and a stylish college student has kept her infection
secret from everyone but her grandmother. A 61-year-old Staten
Island man who is being treated for a recurrence of leprosy he first
contracted 40 years ago says he still has not told his wife of 33 years
(Lerner, F.6).

Even in the 21st century, the ignorance and prejudice of others induce a
fear of rejection among those suffering from leprosy. The physical
challenges of leprosy continue to affect leprosy patients, but
the stigma has a greater impact on the overall wellbeing of those
struggling with leprosy. According to an article written in the Leper Rev,
“the stigma of leprosy is a real phenomenon in many people’s lives that
affects their physical, psychological, social and economic well-being”
(Rafferty, 119).

The stigma leprosy patients must face has a greater impact on their lives
and the lives of those around them. The ignorance surrounding leprosy
drives the stigma because it is seen as a curse, sexually transmitted
disease, or genetic disorder; the fear of the unknown caused society to
push leprosy patients away. One patient expressed his views on the
harshness of the stigma, “we can endure losing fingers and toes, eyes and
nose, but what we cannot endure is to be rejected by those nearest and
dearest” (Rafferty, 120). For many the fear of rejection by family and
society has a much greater impact on the patients than the disease itself.

The prejudice surrounding the disease creates psychological issues that
add to the difficult rejection leprosy patients already experience. Once
branded as a leper by society, leprosy patients become withdrawn from
society because they feel unaccepted and unwelcome. Psychological
issues arise for leprosy patients when they begin to “isolate themselves
from society, thus perpetuating the idea that leprosy is something
shameful to be hidden away” (Rafferty, 123).

Being ostracized from society and led to believe they must hide away create
serious psychological complications. During treatment of the disease, patients
lose self-confidence; believe they are being cursed for sin, or experience
denial and depression. Even after treatment of the disease, these
psychological issues still conflict leprosy patients making it hard to fully
function.

"The greatest challenge in working with leprosy today is
rehabilitation, economic and social reintegration. It is very simple to cure
this ailment with medicines. But to alter a society's attitudes, to get it to
understand that a cured patient is a perfectly normal person with the
same right to life and a job as the rest of us-- that's a very different story"
(Jaeggi, 21). We know what the challenges surrounding leprosy are; we
must now work to eliminate the challenges by correcting the prejudice.

The lack of education surrounding leprosy is a major problem in many
areas of the world; patients, potential patients, and medical professionals
all lack basic knowledge of the disease. According to Lerner’s 2003 article
in the New York Times, there were more than 7,000 leprosy patients in
the U.S. It is also suggested that a majority of other cases remain
undiagnosed because of the lack of medical education pertaining to
Hansen’s disease.

Arrangements should be made to educate high-leprosy affected areas
such as India, South America, and Africa with specific plans to teach each
area and ensure educating without offending or insulting. Leprosy
patients need to be aware of the new medical advancements to encourage
them to seek care. Having a basic understanding of the treatment and the
results of treatment, patients will be more likely to accept help.
Educating leprosy patients is an important step, but educating families
and the community can have just as strong an impact. Educating the
youth is important especially because they are the future of the
community; “hopefully, as they grow up, their generation will have a
different perspective on leprosy” (Rafferty, 126).

Educating the world about leprosy is important to eliminating the stigma
but generalized medicine helps establish the fact that leprosy is no
different from any other disease. Using specialized medical treatment
facilities only broadcasts the fact that leprosy is different from other
diseases and requires segregation. With the development of leprosy
colonies and institutions, private medical treatment facilities have
opened in an effort to treat leprosy in a modern way, but this creates the
problem.

In order to fully treat leprosy and help eliminate the stigma leprosy
patients need to become socialized within their society. By casting out
and ostracizing leprosy patients, it only elevates the idea that they are
not worthy to be a part of society. It has been proven through research
experiments that treating leprosy within society helps eliminate the fear
and prejudice within the community (Cross, 370).

Many believe that “it will be more satisfactory and efficient to prevent
stigmatization than to try to reintegrate patients already rejected”
(Rafferty, 123). Though this may be true, it is still important to work with
those rejected in order to help them establish a healthy lifestyle. Leprosy
patients with severe cases need to undergo physical therapy in order to
learn how to work with their disabilities. By learning to live with their
disabilities, it gives them a chance to live without begging.

In India, the Rising Star Outreach program has established micro-lending
programs for leprosy patients to begin working in the modern world. “By
empowering such individuals so that they can contribute to and enhance
the development of their communities, it may be possible to alter the
negative emotions that such marks evoke” (Cross, 372). By taking small
steps to integrate leprosy patients, it becomes easier for them to grow as
individuals, and as a community, making a future without prejudices and
stigma more attainable.

When the realization occurs that the stigma is as much a disease as
leprosy, maybe more action will be taken to eliminate both in the world
today. Having discussed modern solutions, actions can be taken to
implement these changes. The stigma affects leprosy patients overall
wellbeing and way of life on a broader scale and with greater
consequences than the physical aspects of the disease.

By working to educate, generalize treatment, and socialize leprosy
patient’s, future treatment will become more effective and international
leprosy rates will decrease. If leprosy rates decrease and the disease
becomes viewed as a curable, inclusive disease, the stigma will also
decrease. If the stigma changes in the future, then the physical
difficulties of leprosy will be easily treated; leprosy patients will not
experience the hardships of prejudice and stigma.