Nevertheless, according to WHO statistics, hundreds of thousands of people around the world still develop this "biblical disease" every year, and over 11,000 of those registered in 2018 already had leprosy-related disabilities as a result of the disease. Leprosy is prevalent in the tropical and subtropical countries of the global south. An estimated 5,000 cases of leprosy occur in Nigeria annually.
As with most neglected tropical diseases, leprosy tends to spread an infection through poverty. Leprosy in turn means for most of those affected a life of poverty due to visible disabilities, social exclusion, discrimination and stigmatization.
In addition to medical treatment, the focus has always been on holistic, inclusive measures to support (former) patients in order to improve people's living conditions over the long term.
Leprosy is an infectious disease, the pathogen of which attacks the skin and the nervous system and destroys them. Although the leprosy bacterium (Mycobacterium leprae) was discovered by the Norwegian doctor Gerhard Armauer Hansen as early as 1873, it has not yet been possible to cultivate the pathogen on cultivated soil and develop a vaccine against leprosy. The incubation period is three to four years on average, but it can also be up to 30 years. The World Health Organization (WHO) counts leprosy among the 20 neglected tropical diseases (NTDs).
Although leprosy is one of the oldest known diseases in human history, the exact route of infection is still unknown. There is an urgent need for research here. The WHO has now classified leprosy as a droplet infection, but contact with a sick person must be close and long-term - touch alone does not lead to an infection.
Persistent stress, malnutrition, poor hygiene conditions, cramped living conditions or unclean drinking water: poor so-called social determinants weaken a person's immune system and promote infection with leprosy. This is why this NTD is also considered to be associated with poverty and occurs above all in countries in the Global South. In the Middle Ages, leprosy was also a major problem in Europe. But as general living conditions improved, this “disease of poverty” disappeared.
The disease begins in the early stages with visible patches of skin, which is why it is often confused with other skin diseases. As it progresses, bumps and lumps form on the skin and, in the long term, nerve damage: Those affected lose feeling in their hands or feet. Injuries or burns are not given sufficient attention due to the lack of pain sensitivity. If left untreated, the wounds can become inflamed, chronic ulcers, disabilities and loss of limbs can result, making it impossible to work.
After the onset of the disease, leprosy can be diagnosed with the simplest means, for example with a pen: If people with closed eyes do not feel a light touch on a typical patch of skin, the disease is very likely. The detection of a leprosy infection - before the outbreak of the disease - is much more difficult, however, suitable methods are currently being researched. In connection with the long incubation period of up to 20 years, it would be an important milestone in the fight against leprosy to be able to diagnose so-called latent leprosy infections: Because those affected spread the pathogen before they notice the disease in themselves.
Yes, since 1982 there has been a combination therapy (multidrug therapy, MDT) consisting of a mix of the antibiotics rifampicin, dapsone and clofazimin. It was developed with the financial and technical support of DAHW German Leprosy and Tuberculosis Aid at the Borstel Research Center. According to a successful study in Malta, MDT has been the WHO global standard since 1983 and has to be taken for six to twelve months. This means that all leprosy patients can be cured.
Persistent stress, malnutrition, poor hygiene conditions, cramped living conditions or unclean drinking water: poor so-called social determinants weaken a person's immune system and promote infection with leprosy. This is why this NTD is also considered to be associated with poverty and occurs above all in countries in the Global South. In the Middle Ages, leprosy was also a major problem in Europe. But as general living conditions improved, this “disease of poverty” disappeared.
People affected by leprosy are still marginalized and, in some countries, even legally discriminated against. For example, for religious reasons (in the Middle Ages, leprosy was also considered a “punishment from God”) or because of the deep-seated fear of an illness that can be so cruel to people. As a result, those affected hide their infection. Treatment that is too late or completely absent leads to irreversible disabilities that those affected have to live with for the rest of their lives.
However, many patients also have no access to medical treatment, be it because of a (leprosy-related) disability or a lack of health care infrastructure. Last but not least, there is also a lack of knowledge about leprosy among medical professionals worldwide. Those affected are diagnosed and treated too late or not at all. Educational work, active search for cases in remote regions and the training of health personnel are therefore among the central elements in RedAid/DAHW's leprosy work.
Thanks to a study also co-financed by DAHW, it was possible to prove in 2016 that a single dose of the antibiotic rifampicin to contact persons of leprosy patients can prevent infection. The WHO has been recommending this so-called post-exposure prophylaxis (PEP) since 2017, taking into account defined criteria.
In 2019, DAHW started another research project together with the Dutch Leprosy Aid NLR, the respective national health programs and the Erasmus University in Rotterdam to find out how this single dose to contact persons can be introduced as a standardized prophylaxis measure in national health programs.
In 2019, the World Health Organization (WHO) registered more than 200,000 new cases worldwide. That is about 6,000 fewer than in the previous year, but if the trend continues, people with leprosy will still have to live in 50 years' time and, as a result, many with severe disabilities. Leprosy is curable and no one would have to suffer from the disease and its consequences such as exclusion, disability and poverty. In addition, many cases are still only found when the leprosy disease has already led to disabilities. The statistics for 2020 will likely show even fewer cases. However, not because fewer people are actually infected, but because corona-related contact restrictions and curfews make the search for a case even more difficult.
95 percent of all new cases occurred in countries of the "global south": India again led the statistics by a wide margin with 114,451 and Brazil with 27,863 recorded new cases. Contrary to the general trend, the number of cases in Brazil has actually increased. But despite the high number of cases, leprosy is officially eliminated according to WHO criteria - a maximum of 1 case per 10,000 inhabitants - due to the population density in India. However, all information in the WHO leprosy statistics should be treated with caution: It can be assumed that in reality they are many times higher. Many people affected by leprosy do not want to be recognized or recorded due to the stigmatization of the disease. Also, some governments keep national statistics under lock and key or do not keep reliable registers because leprosy is linked to poverty and there is concern about the reputation of the state. Or there is a lack of functioning control programs and infrastructures to record all cases.
Drawn for a lifetime
Like many neglected tropical diseases, leprosy is also fraught with prejudice and stigma. Although curable for many years, people affected by leprosy are still expelled. People shy away from shaking hands with (former) leprosy patients or just being around them. Fear of being ostracized, many hesitate to seek medical help if they suspect a leprosy infection. However, if it is diagnosed and treated too late, it can result in visible and irreversible damage to the hands and feet and severe visual disturbances. These disabilities also fuel the stigma of the disease: Even after healing, it is difficult for those affected to participate in (community) life, they have little chance of regular employment and mostly live in poverty.
According to the Association of International Leprosy Aid Organizations ILEP, of the approximately 200,000 people who were registered with a new leprosy disease in 2018, more than six percent were affected by a leprosy-related disability.
If left untreated, the leprosy bacterium damages and destroys nerves, especially in the face, arms and legs. Due to the resulting numbness, affected people do not notice when the skin is injured. If inflammations and ulcers are not properly treated, limbs can die and amputations may even be necessary. In addition, the production of sweat no longer works and the skin becomes dry and cracked. This also increases the risk of infection in the wounds.
Because nerves are no longer functional, limb paralysis can be a further consequence of leprosy. Fingers that can no longer be moved atrophy in a misshapen position (for example in the so-called clawed hand). When a foot can no longer be lifted, walking becomes a torture. Last but not least, damaged optic nerves or eyelids that can no longer be closed can blind those affected.
Since diagnosis and treatment as early as possible is essential to avoid leprosy-related disabilities, active search for cases, especially in remote regions of the countries of assignment, is an important component of RedAid's leprosy work. In addition, medical rehabilitation measures have always played a central role: the provision of orthopedic aids (special shoes and assistants) and plastic reconstructive surgery. In order to sustainably improve the living situation of people with (leprosy-related) disabilities, RedAid applies the concept of community-based inclusive development (CBID) to all projects underlying. For example, awareness-raising campaigns are carried out in the communities, income-generating activities are generated for people with disabilities, savings and loan programs are implemented and the establishment of self-help groups and organizations for those affected is promoted. The aim is to enable people with disabilities to claim their rights and participate in social life.
The Leprosy Centre Uzuakoli (1932 to 1992) by Joseph N. Chukwu and Uche M. Ekekezie. Click to download...
Persons affected by Leprosy in Eastern Nigeria tell their stories in their own words. Click to download...
