Leprosy

Introduction of Leprosy

Leprosy, also known as Hansen’s disease, is a chronic infectious disease caused by the bacterium Mycobacterium leprae, primarily affecting the skin, peripheral nerves, upper respiratory tract mucosa, and eyes. Left untreated, it can lead to progressive and irreversible physical deformities and disabilities. While historically stigmatized as a "punishment from the gods," modern medicine has proven that leprosy is fully curable with timely intervention, and early treatment can prevent disability. The disease spreads through prolonged close contact with untreated patients via respiratory droplets, yet approximately 95% of the population has natural immunity, making casual interactions like handshakes or shared meals non-infectious. Symptoms typically emerge after a 2–5 year incubation period, though they may take up to two decades to appear.

Common signs include hypopigmented or reddish skin patches with reduced sensation, thickened peripheral nerves causing muscle weakness or paralysis, and in severe cases, facial disfigurement known as "leonine facies". Diagnosis relies on clinical evaluation, such as detecting skin lesions with sensory loss, enlarged nerves, or identifying bacteria through skin smears. The World Health Organization (WHO) classifies cases into paucibacillary (PB) with 1–5 skin lesions and no detectable bacteria, and multibacillary (MB) with over five lesions, nerve involvement, or visible bacilli.

Treatment involves multidrug therapy (MDT), a combination of rifampicin, dapsone, and clofazimine provided free of charge by WHO. PB cases require six months of treatment, while MB cases need 12 months. This regimen eradicates the bacteria and halts disease progression, though advanced cases may still experience permanent disabilities. Despite global elimination as a public health problem in 2000 (prevalence <1 per 10,000), approximately 200,000 new cases were reported in 2023, concentrated in Brazil, India, and Indonesia. Challenges include delayed diagnosis, drug resistance in some regions, and social stigma that discourages patients from seeking care.

Preventive measures include active case detection in high-risk areas, post-exposure prophylaxis with single-dose rifampicin for close contacts, and public education to combat misconceptions. WHO’s Towards Zero Leprosy 2021–2030 Strategy aims to eliminate new infections, disabilities, and discrimination through integrated interventions and human rights advocacy. Early detection and treatment remain critical to ending this ancient disease, emphasizing the need for global collaboration and social inclusion to ensure every patient receives timely care and respect.

Historical background and the establishment of leprosarium

From the initial mandatory isolation and exclusion to the humanitarian care and medical assistance provided to the patients at a later stage, a shift that reflects social progress and the gradual improvement of public health policies.

16th Century

- 1568: D. Belchior Carneiro, the first Bishop of the Catholic Diocese of Macao, established the Santa Casa da Misericórdia de Macao outside the city walls (now St. Lazarus Church), also known as the leprosarium, on the Macao Peninsula, as an institution for lepers. The establishment of this institution indirectly indicates that leprosy was already spreading on a certain scale in Macao at that time.

19th Century

- 1885: The Macao Government, in cooperation with the Catholic Church, established the Leprosy Shelter in Ká Hó, initially specializing in female patients, in order to isolate and control the spread of leprosy.

20th Century

- 1925: The Government of Macao begins to gradually relocate male patients from the Taipa Leprosarium to Ká Hó, making the Ká Hó Leprosarium an institution for both males and females.

- 1928: The Macau Government and the Catholic Church decide to rebuild and expand the Ká Hó Leprosarium to provide better isolation and treatment facilities.

- 1930: Completion of the new premises of Ká Hó, including wards, dormitories, chapel, kitchen, and sanitary facilities, forming a more systematic leprosy reception center.

- 1949: The Catholic Church of Macau takes over the entire Ká Hó Leprosarium and builds two new dormitories of two to three stores to accommodate male and female patients respectively, thus improving the living conditions of the patients.

- 1963: Fr. Padre Gaetano Nicosia, an Italian priest, came to Ká Hó to improve the living conditions and social status of the patients.

- 1966: At the instigation of Padre Gaetano Nicosia, the name of the hospital is changed, and it becomes the religious and spiritual center of the hospital.

Late 20th Century

- 1980s: With the popularization of anti-leprosy medication, leprosy is effectively controlled and the number of leprosy patients in Ká Hó village decreases dramatically.

- 1987: The medical mission of Ká Hó Leprosarium was officially terminated, and the number of patients dropped significantly.

- 1992: Ká Hó Leprosarium was converted by the Macao Government into the Kau O Home for the Elderly for the elderly who had recovered but had no home to go back to, ending the medical function of Ka Ho Village.

21st Century

- 2013: The Cultural Affairs Bureau of Macao launched the restoration project of Ká Hó Village, restoring some of the buildings.

- 2019: The restoration project is completed, and some areas are opened to the public, making Ká Hó Village an important place for Macao citizens to learn about the history of medical care.

- 2021: The Cultural Affairs Bureau of Macao organizes an exhibition on the historical archives of the Macao Leprosarium, showing the historical information of the Ká Hó Leprosarium and increasing social awareness.

Government Policies on Leprosy Management

The Government's management of leprosy has always served the core objective of colonial rule. In the early period, it used the power of the church to establish a basic medical relief system. In the middle period, it shifted to strict government-led segregation due to financial and social pressures. And in the later period, it strengthened its colonial influence through regional medical collaboration and territorial claims. This policy not only promoted the development of public health in Macao in the early period, but also deeply marked the Medical Colonisation, and its segregation and ethnic division had a long-term impact on the social structure of Macao and on the relationship between doctors and patients.

16th – Early 19th Century

- 1569: D. Belchior Carneiro established the first leprosarium on the Macao Peninsula, Santa Casa da Misericórdia de Macau, which ran directly by the Church. The management model is based on religious teachings, requiring patients to participate in religious activities like daily prayers and confessions in an attempt to assist in the management of disease through Soul Cleansing, reflecting the dual purpose of Medical Evangelism. The site of the hospital was chosen outside the city (now Wang Tak Tong district), with separate accommodation for men and women, and unmarried patients were prohibited from mixing with the outside world, so as to avoid the influence of the unclean population on the colonial society.

Mid-Late 19th Century – 20th Century

- 1834: Due to the financial difficulties of The Holy House of Mercy, the colonial government started to intervene and allowed private funding for leprosy patients.

- 1867: Enactment of a provincial injunction to stop accepting new patients. With the development of the city of Macao and the need for health management, the government decided to move the leprosarium outside the Macau Peninsula. Thus established the Pac-Sa-Lan in Hengqin in 1882, and the Ká Hó Leprosarium in Coloane in 1885. It was clearly stipulated that male and female patients were to be housed separately, that patients were to be restricted from going out, and that contact with the outside world was to be cut off through fencing and zoning, reflecting the colonial government's priority on public health and safety. Requiring patients to convert to Catholicism and participate in church activities in an attempt to strengthen colonial cultural infiltration through religious identity, with hospitals becoming one of the tools of "medical colonization.

Establishment and Spatial Intent of the Separation Zone of Ká Hó

In 1885, the Government of Macao, in cooperation with the Seminário e Igreja de São José, established a leper colony in Ká Hó, Coloane. The unique geography of the Ká Hó area made it an ideal area for isolation. The area is surrounded by mountains on three sides and the sea on the other, and transportation is very closed, making contact with the outside world extremely difficult. The natural isolation created by such natural conditions made Ká Hó the preferred place to isolate leprosy patients. In the early stage of establishment, only female patients were admitted to Ká Hó Hospital, which might be related to the knowledge of the transmission route of leprosy and the convenience of management at that time. By 1925, with the development of the disease and the need for management, the Government moved the original male leprosy patients in Taipa to Ka Ho, thus forming a unified treatment village with separate management for men and women.

The Portuguese colonial regime’s choice of Ká Hó as a zone for the isolation of lepers was not based solely on the science of epidemic prevention. At a deeper level, the move reflected the practice of power by the governors to exclude lepers from the institutions of urban civilization. In the colonial conception of governance at that time, lepers were regarded as an uncivilized and unhygienic group, and their presence was contrary to the image of a civilized city that the colonial government pursued. Therefore, by concentrating and segregating lepers in Ká Hó, the colonial regime attempted to divest these unusual groups from the normal order of life in the city. In Ká Hó, the lepers’ space was strictly fixed, their lives were completely taken over by the system, and their bodies were medically defined and regulated. The establishment of Ká Hó was not just a space for the treatment of the disease, but a means of legalized exclusion of leprosy patients, under the packaging of medical terminology. This legal exclusion not only limited the freedom of people affected by leprosy, but also deepened discrimination and prejudice against them in society.

Life and operation of leprosarium

1. Living System in an isolated Space

In the early days of the Ká Hó Patient Village, the living conditions were very tough. At first, patients could only live in simple wooden huts, which could not effectively withstand the wind and rain, and the living environment was extremely difficult. Under such environment, it was difficult to ensure the basic needs of the patients, not to mention good treatment and recovery conditions. From the early 1900s to the 1930s, with the support of the church and some charity donations, Ká Hó began to gradually build brick and stone hostels for the patients. These hostels eventually formed a group of five hostel blocks, each arranged in a rectangular layout and equipped with a kitchen, a laundry well, a water well and sanitary facilities. Although the provision of these facilities improved the living conditions of the patients to a certain extent, they only basically met their survival needs, and there was still a big gap between them and the standard of living in normal society. The appearance of these buildings basically constitutes a relatively independent system of survival space, enabling patients to maintain a most basic life in this isolate space.

The Ká Hó Leprosarium faced an acute shortage of medical resources. The Government did not have a permanent medical practitioner at the Ká Hó, but only arranged for visiting doctors to come and visit the Ká Hó from time to time. This lack of medical resources made it impossible for patients to receive timely and effective treatment. Under these conditions, a system of mutual assistance was formed among the patients. Those who are less i take turns to be in charge of the kitchen, preparing food for other patients; at the same time, they have to take on the task of cleaning and maintaining the basic hygiene of the village; in addition, they have to take care of those who are seriously ill and provide them with a certain degree of assistance. Although this system of division of work has been presented as autonomous living, in reality, patients in this system not only suffer from the physical pain of illness, but also take on the responsibility of maintaining the functioning of the village against the backdrop of the lack of medical care and lack of administrative resources. They are forced to perform multiple tasks in their daily lives. They are forced to perform multiple life-labor tasks, their rights and dignity have been neglected to a certain extent.

Patients are almost completely isolated from contact with the outside world. Visitors wishing to enter Ká Hó must obtain approval from the Government or the Church, and even if they are granted permission, they are not allowed to stay for long periods of time. Such stringent restrictions make it extremely difficult for patients to contact the outside world. Many families choose to cut off contact with the patients once they have entered the Ká Hó Village, which further increases the patients' sense of loneliness and abandonment by the community. Under such a system, patients undergo a process of anonymisation of their identities. They are deprived of their original identities in society and replaced by an identity defined by their illnesses; their social relationships are also severed, and their ties with their families and friends are cut off; and their life course gradually comes to an isolated end in this closed space, as if they have been forgotten by the whole society.

2. The participation of religious organizations and the construction of spiritual order

In the face of the dire situation of lack of resources and medical vacancies in the Ká Hó leprosarium, religious organizations, especially the Catholic Church, played a crucial role. Since the 1950s, nuns had been resident in the Ká Hó village. They provide many basic nursing services to the patients, such as carefully cleaning the wounds of the patients to help alleviate their physical pain. After the death of a patient, they will properly dispose of the body so that the deceased will be given due respect. These seemingly mundane tasks are of great help and psychological comfort to patients in distress.

In 1958 the church rebuilt Our Lady of Sorrows Church, which quickly became the spiritual center of the village. It was not just a religious building, but also a place of refuge for the souls of the sick. In this isolated village, the Our Lady of Sorrows Church provided a spiritual haven for the sick, giving them a little bit of hope and comfort in their suffering.

In 1963, Fr. Gaetano Nicosia, an Italian priest, replaced the nuns in Ká Hó. Fr. Gaetano Nicosia, took on the role of a companion and to reconstruct the emotional connection between the patients and the community. He personally shaves the patients' hair, gives them physiotherapy and cooks for them, giving them care and attention in every aspect of their lives. When the patients are on their deathbeds, he accompanies them, prays for them, and gives them spiritual support and comfort. In addition, he also promoted the establishment of a Memorial for the Dead, recording the name and biography of every patient who passed away at Ká Hó. Prior to this, patients often died in obscurity and without any record. This initiative by Fr Gaetano Nicosia put an end to this tradition of anonymous management, giving each patient the respect they deserve and confirming the value of their existence.

The presence of religious beliefs in Ká Hó not only provides comfort to patients in terms of faith, but also serves as a gathering force for patients to self-organize and rebuild their value system. In the Our Lady of Sorrows Church, patients can participate in religious activities such as prayers, which make them feel connected to a higher spiritual power and give them courage and strength to face their suffering. At the same time, activities such as church cleaning and choir organization gave patients the opportunity to participate in collective life, in which they found their own value and sense of belonging, gradually forming part of the expression of patients' subjectivity. These activities leave room for spiritual self-existence for patients under systematic deprivation, enabling them to maintain hope for life and recognition of their self-worth in an extremely difficult environment.

Architectural heritage and current status

1. Tangible heritage of Ká Hó

Some of the architectural groups of the Ká Hó Village are still preserved today, and these buildings have become important witnesses to that period of history. Among them, the main ones include five stone-built patient quarters, a church of Our Lady of Sorrows Church, a cemetery and some living facilities such as laundry slabs and wells. These buildings are typical of Portuguese colonial village architecture, for example, the arched doorways not only add to the aesthetics of the buildings, but also reflect the unique style of Portuguese architecture; the white-grey walls give a simple and plain feeling, and at the same time are adapted to the local climatic conditions; and the small sloped roof tiles help with drainage and thermal insulation, ensuring the practicality of the buildings. The fusion of these architectural elements constitutes the unique architectural style of Ka Ho Village.

As the spiritual center of the village, Our Lady of Sorrows Church has played an extremely important role in the history of Ká Hó. The statue inside is not only a piece of religious art, but also symbolizes the integration of illness, faith and suffering. 

It bears witness to the pain and struggle of the sick in Ká Hó and their search for comfort in their faith. The piazza in front of the church is an important place for festive ceremonies. In this space, patients can gather together to participate in religious activities and feel the warmth and strength of the collective. Highly symbolic and communal, this square is an important carrier of the village's spiritual life and an important place for communication and interaction between patients.

The cemetery area in the south-west of the village contains a number of tombstones, most of which are inscribed in three languages: Portuguese, Chinese and English. However, the content of most of the tombstones is very sketchy, with only the number and gender labelled, and there are even many tombstones with unnamed patients. This situation reflected the marginalized and neglected status of the sick in society at that time. During Fr. Gaetano Nicosia, he began to erect named tombstones and create handwritten memorials for the sick, an act with far-reaching significance. In this way, he strove to counter the institutional tradition of nameless deaths, so that the life of every patient was duly honored and recorded, and so that they could leave their own traces in history.

2. Status of heritage conservation

The spatial function of the Ká Hó Hospital has been terminated since the last patient passed away in 2010. At present, some of the buildings are used by social welfare organisations on a temporary basis, for example, as temporary care hostels, but such use is only temporary and lacks long-term planning and management. Although the Our Lady of Sorrows Church still maintains its daily religious activities, the management of the entire Ká Hó's pace has not been formalised so far. Although the Macao government has put some of the buildings on the list of historic buildings for conservation, which shows that the government is aware of the historical value of the buildings in Ká Hó, it has not yet initiated a comprehensive heritage conservation plan. This makes the architectural heritage of Ká Hó still face many dilemmas in terms of conservation and development.

In 2013, the Church hosted the exhibition “Land of Hope”, an exhibition of groundbreaking significance. For the first time, it systematically presented the historical information and patient memories of Ká Hó, allowing more people to learn about Ká Hó’s past and those forgotten stories. This exhibition signalled the community’s rediscovery of this part of Ká Hó’s history and aroused concern for the preservation of Ká Hó’s architectural heritage. However, despite this discovery and concern, Ká Hó as not yet been included in the scope of Macao’s World Heritage conservation. At the institutional level, there is still silence on the conservation and management of Ká Hó. There are no clear policies and measures to ensure that the architectural heritage of Ká Hó is properly conserved and passed on.

Ká Hó is not only an ordinary architectural heritage, but also a place of physical evidence of the trauma of the social system. It bears witness to the segregation and discrimination against leprosy patients in Macao’s history, as well as the patients’ struggle and perseverance amidst their suffering. Whether it is preserved or not is not only about the fate of these physical buildings, but also about whether the public memory can accommodate those lives that were once ‘stigmatised’. If the architectural heritage of Ká Hó is not properly preserved, it is likely that this part of history will be gradually forgotten, and the stories of those who have lived here will be forever sealed. Therefore, the conservation of Ká Hó is of great historical and practical significance.

History of medicine and public health revelations

1. From untreatable to controllable: the historical turn in leprosy medicine

Until the nineteenth century, leprosy was regarded as a chronic and incurable malady. In the perception of the time, leprosy was often associated with moral depravity and religious punishment, a perception that made leprosy sufferers not only physical pain, but also social discrimination and ostracism. Due to the lack of effective treatments, the treatment of leprosy at that time mainly relied on traditional herbs, cleansing and isolation, but these methods could not cure the disease at its root and could only alleviate the symptoms to a certain extent.

It was not until the 1950s that antibiotics such as Dapsone, Clofazimine and Rifampicin were introduced into the treatment of leprosy, and combination therapy (MDT) became the standard of care. This shift marked the beginning of the scientific era in global leprosy control, as leprosy moved from a disease considered incurable to one that could be controlled. Through the combined use of these antibiotics, the growth and reproduction of Mycobacterium leprae can be effectively inhibited, thus achieving the goal of treating the disease.

Although Macao is not at the forefront of medical development, it has gradually introduced these medicines and visiting mechanisms with the assistance of the Church, the Government and international charitable organisations. Thanks to these efforts, some patients have been clinically cured, which is undoubtedly a great progress. However, despite the medical progress, the logic of social segregation continued until the end of the system. Even though the patients have recovered, they still face problems such as rejection by their families, ostracism by the community and their inability to live independently, and many of them therefore choose to stay in their villages to end their lives. This shows that medical treatment alone is not enough, and that a change in social attitudes and support for recovered patients is equally important.

2. Structural lessons in public health ethics

The history of Ká Hó provides us with profound lessons in public health ethics. It reminds us that public health policies need to be formulated and implemented with due regard to ethical and humanistic reflection. In the case of the leprosarium in Ká Hó, even when the treatments had achieved remarkable results and the transmission of the disease was effectively controlled, social fear and policy inertia still led to the prolonged isolation of leprosy patients, who were kept in institutional isolation for a period that far exceeded the actual medical needs. This phenomenon reflected the non-adaptability of the system in the face of social change. Therefore, how to strike a balance between effective prevention and control of the epidemic and respect for human rights has become an important ethical reminder from the experience of Ká Hó. In formulating and implementing public health policies, we must consider human dignity and rights, and we must not take prevention and control of diseases as the only goal and neglect the basic needs and values of human beings.

Social Stigma and the Patient's Perspective

1. Life in isolation from the patient's perspective

The patients living in Ká Hó are not just patient numbers in medical records, but living individuals, each with their own stories and emotions. What they experience is not only the physical pain of illness, but also the mental torture of identity deprivation and denial of existence. Many of the patients were forced to change their names and surnames when they entered Ká Hó Village, severing their ties with their families of origin, as if they had been erased from the normal order of society. In this closed institutional environment, they are gradually forgotten by society and live a life of prolonged “death”.

However, even under such difficult situations, the patients still showed resilience and the pursuit of dignity. They have formed mutual support relationships within the village, and through mutual care and support, they have been able to get through the difficult times together; they have also organized daily rituals, such as collective prayers and joint participation in labor, etc. These rituals have not only enriched their lives, but also strengthened their connection and cohesion with each other; and they have formed a micro-community, in which everyone has found his or her own position and value. These are the results of the patients’ self-organization, the embodiment of their efforts to retain the most basic dignity of human beings as human beings in the forgotten corners of society. By taking care of others, participating in choral singing, burial ceremonies, and praying devoutly, they stitch together a silent and resilient life practice on the edge of society, demonstrating the wisdom of human survival and the persistent pursuit of dignity under extreme adversity.

2. Contemporary Memory and the Return of the “Right to Name” (the term “right to name” refers to the fundamental dignity of the individual to be formally recorded, commemorated, and recognized in social history, rather than to the legal right to name)

For a long time, the memory of Ká Hó has been marginalized in Macao society, and the history of Ká Hó and the stories of those patients who used to live there have been forgotten by most people. It is only in recent years, with the efforts of academics, churches, and cultural organizations, that the situation has begun to change. Through initiatives such as organizing the exhibition Land of Hope, compiling a commemorative booklet, and organizing field research for students, these organizations have gradually promoted naming actions in an attempt to incorporate Ká Hó into the narrative of Macao’s social history. These actions were the initial return of the historical naming rights of lepers, allowing the story of Ká Hó and those who suffered from leprosy to re-enter the public eye and receive the attention it deserves.

However, we must recognize that the transformation is still incomplete. The history of Ká Hó and Macao has not yet been written into textbooks. The absence of this history in the writing of textbooks makes it difficult for the younger generation to have a comprehensive understanding of Macao’s history, and they are unable to deeply recognize the stories that once took place on this piece of land as well as the social issues and humanistic values embedded in them. From a broader social perspective, the story of Ká Hó is not only about the history of a group of patients, but it also reflects the attitude and way society treats the disadvantaged. The segregation, discrimination and exclusion suffered by leprosy patients throughout history reflects social prejudice and injustice. Nowadays, the marginalization of the history of Ká Hó has similarly reflected the fact that there is still a phenomenon of neglect and avoidance in the way society treats certain special historical events and groups. Behind this phenomenon is a kind of selective forgetting of collective memory, which makes it impossible for the community to learn enough lessons from history, and it is also difficult to truly realize care and tolerance for the disadvantaged groups.

This requires the concerted efforts of the government, academics, social organizations and every member of the community. The government should play a leading role in incorporating the history of Ká Hó into the education system so that more people can understand this history. The academic sector should continue to conduct in-depth studies on the history of Ká Hó and explore the cultural and social values therein, so as to provide the community with a more comprehensive and in-depth historical knowledge. Social organizations can enhance the public’s understanding of and concern for the history of Ká Hó by organizing various cultural activities, exhibitions and so on, so as to promote a change in social attitudes. And every member of society should also take the initiative to understand and pay attention to these marginalized histories, abandon prejudices, look at the once disadvantaged groups with tolerance and understanding, and accept them as part of society from the bottom of their hearts.

When Ká Hó truly becomes part of the collective memory, it will no longer be a forgotten corner, but an important force for society to reflect on history and promote progress. This history will serve as a constant reminder of the need to respect every life and to make society fairer, more inclusive, and better. It will also inspire people to adopt a more scientific and humanistic attitude when facing future public health problems and social challenges, to safeguard the rights and interests of every individual and build a more harmonious and humane social environment.