The “Small” Problem of Leprosy is Bigger than We ThinkBy Zannah Kearns
In the face of devastating diseases such as HIV/AIDS and malaria, and global needs such as poverty and trade injustice, the relatively “small” problem of leprosy can often be forgotten.
Many people see leprosy as an ancient, biblical disease instead of a real problem that still exists today. In the Bible, the term “leprosy” described a number of skin conditions, rather than the specific Hansen’s Disease that is recognised as leprosy today. The number of leprosy patients may indeed seem negligible on a global scale--407,791 new cases were recorded by the World Health Organization (WHO) in 2004.1 And yet, stories of how this curable disease can destroy lives send a compelling message that even one person’s life and well-being is worth fighting for.
Take Sita, a young school girl with leprosy. Sita was cured and doctors had ensured the surgery done on her hands during a holiday break would not keep her from missing school. However, when administrators at Sita’s school discovered she had leprosy, they didn’t want her to return. Her family, worried they would be shunned by neighbours, also asked her not to come home. She is now being cared for by a girl only a little older than herself and her father comes to visit her just once a month. Sadly, in Sita’s community, leprosy is considered a punishment for misdeeds in a former life. All Sita has had is some counselling from The Leprosy Mission (TLM) staff.
TLM representatives applied to five new schools on Sita’s behalf, providing doctors’ reports to prove she no longer has leprosy. Although one school has accepted her, it is an hour’s walk from where she lives. Because of the nerve damage the leprosy has caused, the trek is difficult.
Can Leprosy be Eliminated?
This figure of less than half a million people diagnosed with leprosy is both helpful and misleading. Since Multi-Drug Therapy (MDT) was developed in 1981, the number of leprosy cases has rapidly declined. In India, the number of cases went from fifty-seven per 10,000 people in 1983 to only 2.4 per 10,000 people in 2003. This is encouraging and these falling rates should certainly be celebrated.
According to the WHO, “elimination” is reached when the rate is just one case per 10,000 people. Globally this figure has been reached. However, leprosy is still prevalent in nine countries: Angola, Brazil, Central African Republic, the Democratic Republic of Congo, India, Madagascar, Mozambique, Nepal and the United Republic of Tanzania. Leprosy is nearly always found among those living in extreme poverty (defined as living on less than US $1 a day).
Although a nation can say they have reached elimination country-wide, if particular areas still have three cases per 10,000, does that country still have true elimination? Nearly seventy percent of leprosy cases today are found in India. Given its population size, even if India were to reach the WHO target, that would still mean 100,000 new cases are diagnosed every year.
And these figures are only the cases that are known. Leprosy is a disease that stigmatizes and so it is a disease that is often hidden and denied. For fear of ostracism, people will cover up the first physical signs of leprosy (sometimes for decades) with little understanding of the permanent damage being done to their bodies.
The Truth Behind the Myths
The truth is, if treated in the early stages, leprosy is curable and leaves no disfigurement or disability. However, leprosy is surrounded by myth and many people are still convinced it is either a curse or a divine judgment for individual sin. People assume it is highly contagious; however, ninety-five percent of people in the world are naturally immune.
Sadly, the fear of rejection can cause an individual to hide the initial pale, numb patches that appear on the skin. Often times, leprosy patients will not seek treatment when they have lost feeling in their hands and feet. Shame and fear often prevent a person from admitting their condition. They know that as a result of being identified with leprosy, they might lose their job, be turned out of their home and village, forfeit any possibility of marriage or be excluded from school. If a person feels no pain and has a family to support, it is hard to convince him or her to stop working and go to a hospital.
Numb hands and feet also mean that people do not notice when they injure themselves. Additionally, the skin, having lost feeling, does not sweat. This means that people get ulcerated wounds or sustain broken bones without realizing it. Continued use of numb hands and feet means people risk inflicting permanent injury on themselves. They risk a lifetime of disability and disfigurement that will forever hinder their ability to perform basic tasks. Of the fourteen million people who have completed MDT in the last twenty years, approximately thirty percent have irreversible disability; over four million have permanent impairments and over two million have visible deformities. Most, if not all, could have been prevented.
TLM brings practical, holistic help for dealing with the physical, social, emotional and spiritual needs of patients. Today, governments carry out the majority of case detection and medical care. The Novartis Foundation, http://www.novartisfoundation.com/, provides MDT free of charge. Fifteen organizations, of which TLM is the largest member, are part of the International Federation of Anti-Leprosy Associations (ILEP). ILEP works with governments to implement leprosy control programs. This involves technical support teams who provide training, advice and encouragement for government health workers.
TLM has twelve hospitals in India, many of which provide general healthcare, as well as special referral care for leprosy patients. TLM surgeons carry out reconstructive surgery that can repair damaged limbs. Physiotherapy and teaching self-care are also part of patient services. Once a person has damaged the nerves, the loss of feeling is permanent; therefore, ex-leprosy patients need to be taught (and encouraged to continue with) self-care routines such as regularly soaking in water, oiling and exercising anaesthetized feet.
Much of what TLM does today involves work with long-term rehabilitation and development. Each region (Africa, South Asia and South East Asia) operates a variety of programs focused on socio-economic needs: self-help community groups, vocational and skills training, micro-credit schemes, health awareness and advocacy work.
All projects embody TLM’s vision for a world without leprosy and TLM’s goal to eradicate the causes and consequences of leprosy. Tackling the causes includes enabling early detection, teaching health awareness in communities and addressing issues of poverty that make people vulnerable to disease. Eradicating the consequences means confronting the social repercussions of leprosy: reconciling families, facilitating community projects, encouraging income generation through micro-credit schemes, providing education and low-cost housing and equipping people to advocate for equal rights and opportunity.
All ventures encourage genuine participation and give the individuals a voice. TLM staff and their projects work to promote dignity within each individual, empowering them to demonstrate their capabilities. Often the simplest thing (i.e. being able to work again because a micro-credit loan has enabled a person to buy a sewing machine) can be enough for that person to regain the respect of fellow villagers. Equally often it can be a more complex struggle. A person might be given the opportunity to set up a kiosk but neighbours may not buy food from someone they perceive as infectious. The need for continued advocacy efforts that gain the support of local governments is key to changing attitudes that stigmatize.
Gaining a Sense of Self-worth
The psychological effects of having leprosy can be challenging as well. The term “self-stigmatization” is often used to describe leprosy patients who develop very low self-esteem. Due to distress, depression and hopelessness, patients do not continue with treatment or physiotherapy. Imagining they will be ostracized by their community, they choose to ostracize themselves. TLM employs counsellors to help people deal with these issues. Much prayer and encouragement is needed through staff building relationships with leprosy-affected people and their families, demonstrating through their actions and attitudes that everyone is equal and that leprosy doesn’t necessarily mean total devastation.
Spreading the Good News
As a Christian organization, TLM doesn’t only want to spread the good news that leprosy is curable and treatment is free. It also wants to share the ultimate good news of salvation through Jesus Christ. This is a challenge for TLM and many other Christian Non-Governmental Organizations. Through the goodwill of governments, TLM is allowed to do its work in many countries. Some of these countries do not welcome the Christian message. Evangelism may be forbidden and individuals of different religions may engage in disagreements regularly. If an organization is perceived to have a “hidden agenda,” it may be asked to leave. The primary goal of TLM is to work with people affected by leprosy, to bring healing and long-term positive change in their lives.
However, as an organization founded and motivated by faith in Jesus Christ, TLM understands that true transformation can only take place when a person comes to know Jesus as Lord. In TLM-run hospitals, Christian services and prayer meetings welcome anyone who would like to attend. Christian staff are encouraged to share their faith when appropriate and students at the vocational training colleges are taught the gospel. About twenty-five percent of students come to know Christ and continue in their faith after graduation.
Much of the spiritual direction of the organization is focused on teaching and nurturing staff, with the view toward encouraging them in their personal faith and motivating them to use opportunities to share their faith with patients and community groups.
The very fact that TLM exists is a testament to its Christian ethos. There have been a number of incidents where, for example, Hindus have been deeply moved by the care and friendship they have received from Christian staff. They are excluded by people of their religion, and yet are offered help and friendship by Christians.
Prayer is a vital part of TLM’s spiritual ministry and an issue with which TLM is involved. Many staff teams begin their days with prayer. Supporters are encouraged to pray over every project and issue with which TLM is involved with.
What Can All Christians Do?
It is distressing the number of times incorrect and prejudicial comments are made in the West about those with leprosy. Make it your policy never to use the word leper. A person should never be defined as a disease. You would never call a cancer patient a cancer. Become informed. Visit TLM website at http://www.leprosymission.org/ to find more ways you can help.
Zannah Kearns worked as communications officer for The Leprosy Mission, www.leprosymission.org, for two years. She now works on her church’s ministry team in South London.