1 Leprosy and Hansen’s disease
Leprosy is one of the oldest diseases we know of. It has often been associated with religious and social stigma, and people all over the world have experienced that their symptoms and diagnosis have had wide-ranging, long-term consequences for the further course of their lives.
The disease has been known by different names through the ages, both in the medical community and among the general population. Although leprosy is considered to be one of the oldest known diseases, it was not clearly distinguished from other diseases that affected the skin until the 19th century. Up until then, many of those believed to have leprosy probably had other diseases, such as syphilis, skin cancer, cutaneous tuberculosis and certain forms of scabies.
Some designations used to describe the disease or people affected by the disease have been abandoned because they are regarded as disrespectful or because using different terms helps to separate the medical understanding of the disease from the traditional stigma and mythology it carried, for instance the earlier commonly used term ‘leper’.
The term leprosy still has a clear medical definition and is used in large parts of the world. However, in many countries the official term is now Hansen’s disease, named after Doctor Gerhard Armauer Hansen from Bergen, who succeeded in identifying the leprosy bacteria in 1873.
It is important to be aware of how we use terminology when discussing leprosy. Using the correct terminology can help to reduce social challenges some people diagnosed with leprosy still experience today. Referring to present-day individuals who have been diagnosed with leprosy as ‘lepers’ is unthinkable and is regarded as extremely offensive. Even though the disease can be cured and its prevalence is in strong decline worldwide, people who contract leprosy and their families still face prejudice and discrimination. Ignorance about the disease and outdated perceptions and taboos can often be an obstacle to treatment. It is therefore fair to say that leprosy today is more of a social challenge than a medical one.
This exhibition addresses both the medical and social aspects, and St Jørgen’s (St George’s) Hospital illustrates many different sides of the history of the disease. On the one hand, the buildings represent an important part of the history of the health service in former times, of scientific progress and how the public effort has served as a model, for better or worse, for the fight against the disease in other countries. At the same time, these listed buildings stand as a monument to many thousand individual fates and are a place of reflection and contemplation for many people.
Illustration 1: Leprosy research in Bergen, and especially Gerhard Armauer Hansen’s discovery of the leprosy bacteria, has been famous internationally for well over a century. In 1901, a bust of Hansen was erected by ‘colleagues and friends from all countries’. The bust is in Bergen’s botanical gardens.
2 Leprosy
Leprosy is a chronic infectious disease caused by the leprosy bacteria, Mycobacterium leprae. The infection is mainly spread by droplets from the mouth or nose of a sick person entering other people’s respiratory system, but the risk of infection is small. Infection is usually only transmitted through close and lasting contact with people with untreated leprosy, and only a small percentage of those infected develop symptoms. For the disease to develop, several conditions must be present in addition to the bacteria. Poor nutrition, and especially lack of protein, is a key factor in many cases. Genetic factors also play a role, and it is assumed that a large proportion of the population have natural immunity and will therefore not develop leprosy under any circumstances.
In terms of symptoms and life expectancy, there are great differences among those who develop the active disease, but, for many, the disease develops slowly and lasts for a long time. The incubation period can vary from around a year to more than 20 years, but it normally takes between 3–5 years from a person is infected until the first symptoms appear. Leprosy mainly affects the skin, the mucous membranes in the upper respiratory tract, the eyes and the peripheral nerves. Today, leprosy can be cured by a combination of different types of antibiotics. However, if left untreated, people with the disease could develop various lesions and functional impairments over time. Previously, the various complications that accompanied the disease could lead to death.
The development of the disease depends on various factors, such as the amount of bacteria and the individual patient’s immune response. The symptoms can manifest themselves in many different degrees and variants, and a distinction has traditionally been drawn between two main types of leprosy: the lepromatous and the tuberculoid forms.
The lepromatous form develops in people with a significantly impaired immune system, and the infection often takes the form of characteristic nodules in the skin. Many patients can experience lengthy periods when the infection is less active, but regular outbreaks will lead to a steady deterioration in the patient’s appearance and health. The nodules often appear on the patient’s face and hands, but internal organs can also be affected. Nodules in the windpipe, vocal cords and ear canals can lead to hoarseness, breathing difficulties and poor hearing.
In the tuberculoid form of leprosy, it is the peripheral nerve system that is attacked, particularly the sensory nerves in the skin. This leads to a lack of sensation, or anaesthesia, which, in turn, can lead to a risk of burns, cuts and stress injuries, usually on the hands and feet. As a result of frequent ulcerations and persistent infections, the fingers and toes can often be significantly damaged over time, including bone and cartilage damage. The degeneration of cartilage in the nose and throat can lead to hoarseness and breathing problems. Many of the body’s natural reflexes and fine motor functions are also damaged, and patients can suffer from characteristic facial paralysis and disfigurement. Many contract eye infections and gradually go blind.
Illustration 1: A patient from St Jørgen’s Hospital with the lepromatous form of leprosy. Water colour by J L Losting from the 1840s, Atlas Colorié de Spedalskhed.
Illustration 2: A patient from St Jørgen’s Hospital with the tuberculoid form of leprosy. Water colour by J L Losting from the 1840s, Atlas Colorié de Spedalskhed.
Objects: Wax models: A gift to colleagues in Bergen from the German doctor Oscar Lassar (1849–1907).
For more information about the disease, its treatment, and its current global prevalence, we recommend visiting the World Health Organization’s website.
3 St Jørgen’s Hospital before 1700
St Jørgen’s Hospital is Norway’s oldest foundation and one of the oldest hospital institutions in Scandinavia. The first mentions of the hospital are found in two Hanseatic wills, one from 1411, in which it is called ‘the hospital by Nonneseter Convent’ and one from 1416, where it is referred to as ‘the new hospital’. The name St Jørgen’s Hospital was first recorded in 1438.
It should be noted that the term ‘hospital’ had a different meaning then than it does today. It is derived from the Latin hospitalis, simply meaning ‘for a guest’, and could be used to describe any place that offered shelter. This could be housing for pilgrims or almshouses, but many hospitals specialised in guests with some kind of medical problem. The amount of care given in these hospitals for the sick ranged from nothing but a roof over their head to the provision of food and other necessities, while a few also offered some kind of treatment.
It was this kind of hospital St Jørgen’s was well into the 19th century, when it gradually started to change into something closer to a hospital in the modern sense of the word. Because of this, we refer to the people living here as ‘residents’ rather than ‘patients’.
It has been assumed that the hospital was run by Nonneseter Convent in Bergen up until the Reformation in 1536. Like many other medieval hospitals in Europe, St Jørgen’s was situated outside the town centre.
As a result of the Reformation, all monastic property was confiscated by the Crown. In 1545, St Jørgen’s Hospital was formally established as a royal foundation, and former monastic property was transferred to the foundation as part of its initial capital. At the same time, St Jørgen’s was defined as a general hospital institution that would admit people with various health problems.
A catastrophic fire in 1640 reduced the whole area from Vågsbunnen by the harbour to St Jørgen’s to ruins. At the hospital, ‘17 people were burned alive’. The fire probably destroyed the last remains of the medieval buildings. The hospital’s statutes from 1654 bear witness to difficult times. The hospital had many residents, little income, its buildings were in a poor state and it had large debts. Most of the patients had been diagnosed with leprosy. Cost-saving measures affected the running of the hospital in the period up until 1700.
Illustration: St Jørgen’s statues from 1654
Objects: Fire buckets from the 1750s
4 The 18th century – a new hospital rises from the ashes
On 19 May 1702, Bergen experienced its biggest and most disastrous fire ever. About 80 per cent of the town was razed to the ground and St Jørgen’s Hospital was again reduced to ruins. The hospital’s 58 residents were lodged with the poor people of the town for some months. In early winter, they were able to move back into the hospital’s new main building, although it was not until the following year that the building was finally completed. All the indications are that the reconstruction work was a rush job, and it soon became apparent that the new building was unsatisfactory. It was demolished in 1754 and replaced by a new main building that still stands today.
The number of residents increased rapidly as the 18th century progressed, from 58 residents in 1702 to 90 in 1745. Ten years later, when the large new main building had been in use for a year, the number of residents had reached 140. St Jørgen’s was one of the biggest hospitals in Norway and an important institution in 18th century Bergen. The main building from 1754 was described as ‘one of the very biggest and most prominent in the town’.
Illustration 1: When it was built, the hospital building from 1754 was one of the biggest buildings in the town. It has much in common with other European institutional architecture from the same period, with large common areas and small adjoining patient rooms on two floors.
Illustration 2: St Jørgen’s Hospital as measured and drawn by Johan Lindstrøm and Nils Tvedt. 1921.
Illustration 3: Perspective drawing of Bergen from the 1740s. St Jørgen’s Hospital is marked with the number 13.
5 St Jørgen’s Hospital around 1800
St Jørgen’s Hospital had always had to contend with difficult conditions and poor finances. Its income largely came from the many farms the foundation owned in Western Norway, but the farms were very far from lucrative and the income from them proved difficult to collect. Charitable donations from the townspeople also tended to dry up when the economy struggled. One cost-saving measure that was introduced already in 1654 was to pay a subsistence allowance directly to the residents, who then had to pay their own housekeeping expenses. Despite such cost-savings, the hospital’s administration could be several years in arrears with its payments.
In 1816, the hospital chaplain Johan Ernst Welhaven (1775–1828) published a report on conditions at St Jørgen’s Hospital that gave cause for concern. The residents were in no way properly cared for and they did not have enough money for food. In Welhaven’s report, the hospital is described as a graveyard for the living.
Welhaven’s report was the spark that triggered the public effort to combat leprosy in the 19th century. The year after the report was published, the State decided to establish a dedicated position as physician at the hospital, to be financed by the town of Bergen and the surrounding counties. Staffing was also to be increased and the residents were to be given free medication. Even though the progress was small in terms of treatment, these changes proved to be among the most important in the hospital’s history. With its decision from 1817, the Government of the young Norwegian State had sent a signal that the situation of residents was a matter for the public authorities and that it had ambitions for the treatment of patients with leprosy and for the running of St Jørgen’s Hospital.
Illustration 1: In the report from 1816, the hospital chaplain described both the degrading conditions at St Jørgen’s Hospital and the many unfortunate residents. Johanne Tollefsdatter had been hospitalised since 1780.
Illustration 2: Anna Svensdatter was another of the residents who suffered from the lack of proper care. Welhaven wrote that her eyes were swollen and filled with a grey, slimy fluid. She had many open sores with hard scabs.
Object: St Jørgen’s collection box for alms from 1778.
6 The basis for public work on leprosy in the 19th century
In 1832, army doctor Jens Johan Hjort (1798–1873) embarked on a journey through Norway. The objective was to study people’s state of health and the health institutions along Norway’s coast, with particular emphasis on leprosy. Hjort published a comprehensive report in 1833, in which he pointed out that St Jørgen’s Hospital lacked bathing facilities of any kind, that the conditions were unsanitary and that the buildings were in a completely unsatisfactory condition. When Hjort visited the hospital, it still had a small minority of residents who were not affected by leprosy. They were for the most part old people who had paid for a place at the hospital. Hjort could report that healthy and sick residents lived side by side, as did men and women, and there was drinking and disorderliness among them.
Hjort was not the only person to point out that the situation was both reprehensible and chaotic. Several other reports followed, and the first nationwide census of people with leprosy was carried out in 1836. In the late 1830s, the Storting, the Norwegian parliament, passed its first resolution to build new public leprosy hospitals.
Illustration 1: One of the hospital’s two kitchens in the 1930s. After his inspection a hundred years earlier, army doctor Hjort reported that these rooms were the scene of ‘great disorder and lack of cleanliness’, particularly as a result of the gutting of herring and other fish, which, according to Hjort, was the residents’ ‘primary source of nutrition’.
Illustration 2: The main ward photographed in the 1930s. Hjort referred to this room as the large workroom. ‘The residents’ work primarily consists of sewing shoes, making sausage sticks and matches, which the patients themselves sell around the town.’
Objects: Bloodletting knife and spring lancet.
7 Norwegian leprosy research in the 1840s and 1850s
In 1839, Doctor Carl Wilhelm Boeck (1808–1875) was awarded a public scholarship to study leprosy in Norway and measures taken to combat it abroad. Boeck started with a visit to St Jørgen’s Hospital, where he entered into a formal collaboration with Daniel Cornelius Danielssen (1815–1894). Danielssen was a newly appointed army doctor, but, since 1839, he had also studied the leprosy patients at St Jørgen’s. At Boeck’s proposal, Danielssen was hired as a hospital physician for St Jørgen’s in January 1841. A few weeks later he was awarded a salary by the State, which enabled him to dedicate himself to studying the disease. The cooperation between Danielssen and Boeck would form the basis for international leprosy research for many years to come.
Boeck recommended that the Norwegian parliament, the Storting, intensify its efforts to establish new facilities for people affected by leprosy. In 1845, the Storting allocated funding for Lungegaards Hospital to be built in Bergen as a curative facility for patients with early-stage or light cases of leprosy. It was also decided that the results of Danielssen and Boeck’s research were to be published at the State’s expense.
Illustration 1: From 1839, the young Daniel Cornelius Danielssen (1815–1894) was deeply engaged in studies of the patients at St Jørgen’s.
Illustration 2: Through his studies abroad, Carl Wilhelm Boeck (1808–75) laid an important foundation for public work on leprosy.
8 ‘On leprosy’
Danielssen and Boeck’s monograph Om Spedalskhet (On Leprosy) was published in 1847. The monograph was supplemented by ‘Atlas Colorié de Spedalskhed’, a collection of illustrations by the Bergen artist Johan Ludvig Losting (1810–1876). Losting’s illustrations portrayed typical cases at St Jørgen’s Hospital, as well as a number of specimens prepared for macroscopic and microscopic examination.
The monograph from 1847 is the first modern symptomatology for leprosy. While it had previously been very unclear what the term leprosy referred to, the monograph from 1847 established it as a specific and unambiguous diagnosis. Danielssen and Boeck also provided a historical overview and detailed descriptions of cases, and they raised issues that would prove to be important in leprosy research right up to modern times.
One key question in their work was what caused the disease. Danielssen and Boeck had emphasised describing leprosy as a specific disease, not just a general condition among undernourished and unhygienic Norwegian farmers. There was nonetheless great uncertainty about what the real cause of the disease was. Danielssen had observed that a large percentage of the patients at St Jørgen’s had other family members affected by leprosy, and he identified several so-called ‘leprosy families’ in Western Norway in which the disease could be found over many generations. There was little to indicate that the disease was infectious. The healthy nurses and residents at St Jørgen’s did not seem to become infected. Danielssen concluded that leprosy was a hereditary blood disease. He claimed that the disease could probably be contracted as a result of a reckless lifestyle, but that it was mainly passed down from parents to children.
Illustration 1: a) A hand characteristic of the tuberculoid form of leprosy. Most of the fingers have wasted away as a result of total necrosis of the phalanges. B) A tongue with the epiglottis and a little of the throat, characteristic of the lepromatous form of leprosy. Yellowish white nodules can be seen on the tongue and the edge of the epiglottis.
Illustration 2: A womb with ovaries and fallopian tubes and its broad ligament on which many small yellowish white nodules can be seen. The fallopian tubes are completely filled with nodules that seem to form a shape resembling a rosary.
Illustration 3: The different stages of eye disease in the lepromatous form of leprosy.
Illustration 4: A 12-year-old boy in whom the rounded, crimson, somewhat blue-tinted blotches that are a distinctive characteristic of lepromatous leprosy are even more pronounced after having disappeared several times for short or long periods. Here, the blotches are still not elevated in relation to the surrounding skin, and they no longer disappear when finger pressure is applied.
Illustrations by J L Losting. From Atlas Colorié de Spedalskhed
Object 1: Amputation saw from the mid-19th century.
Object 2: Surgical equipment from the mid-19th century.
9 The public leprosy institutions
The theory that the disease was hereditary influenced the work done on leprosy in Norway for many years. It was a declared goal to isolate young people diagnosed with leprosy before they could start a family and pass the disease on to their children, but it was also recognised that more research was needed. In 1845 the Storting allocated funding for the building of Lungegaards Hospital, to which the first patients were admitted on 1 October 1849. Danielssen thus became Chief Physician at the only research hospital built for the treatment of a single disease in Norwegian history.
Several new specialised hospitals were established in the ensuing years. Reknes Hospital outside Molde had existed from the early 18th century, but it was now upgraded to a modern leprosy hospital. The new Reitgjerdet Hospital near Trondheim opened in 1861. The flagship among the new 19th century leprosy institutions was nonetheless Pleiestiftelsen for Spedalske No. 1 (Nursing Foundation for Leprosy Patients No 1) in Bergen, which opened in 1857.
From the mid-19th century, Bergen had three leprosy institutions and the biggest concentration of leprosy patients in Europe. The Norwegian State had facilitated research by providing substantial funding and a unique institutional environment. This prioritisation produced striking results during the next few decades.
Illustration 1: The construction of Lungegaards Hospital in Bergen was completed in 1849. The research hospital was reserved for early-stage and light cases. Many patients wanted to be admitted, because the hospital was described as a curative facility. Some were discharged, but for most of the patients, admission to Lungegaards Hospital was the beginning of many years of institutionalised life.
Illustration 2: Reitgjerdet near Trondheim was established as a state nursing foundation for leprosy patients in 1861.
Illustration 3: Daniel Cornelius Danielssen was a political driving force for an offensive against leprosy. It was during his period that leprosy became an issue that the Norwegian authorities gave financial priority to. Danielssen’s theory that the disease was hereditary influenced both the establishment and running of the new leprosy institutions in the mid-19th century.
Objects: Signs from Pleiestiftelsen for spedalske No. 1: Workroom. Patient Library. The Chief Physician’s waiting room.
10 Pleiestiftelsen for spedalske No. 1
This nursing foundation, which opened in 1857, was one of Norway’s biggest hospital institutions and one of the biggest wooden buildings in the country. It could accommodate 280 patients in 40 seven-bed rooms. The facility was regarded as exemplary by many people in the medical community, and the floor plans were reproduced in international publications as an example to be followed.
The nursing foundation was intended for uncurable leprosy patients who could expect to spend the rest of their lives in an institution. The institution had a bad reputation among patients. The discipline was very strict and the possibilities for leave were few. When the residents were not busy in the workrooms, they were sometimes locked in their rooms. Conditions gradually improved, but the institution’s reputation for coercion lasted until well into the 20th century.
Illustration 1: Floor plan of Pleiestiftelsen.
Illustration 2: House rules for Pleiestiftelsen.
Illustration 3: Pleiestiftelsen for spedalske No. 1.
Objects: An ointment jar from St Jørgens Hospital from 1873 and medicine bottles from Pleiestiftelsen.
11 The National Leprosy Registry of Norway
A new state body was established in 1854. The Chief Medical Officer for Leprosy was tasked with monitoring and coordinating the public effort against leprosy. Ove G Hoegh (1814–1863) was the first holder of this office, and he soon started keeping a register of people with leprosy in Norway. The National Leprosy Registry of Norway was formally established in 1856. Its purpose was, firstly, to document the prevalence of leprosy and, secondly, to clarify the causes of the disease. Thirdly, it was intended to lay the foundations for continuous evaluation of the public effort against leprosy.
After the establishment of the Registry, district physicians were obliged to register everyone with leprosy in their district. Parish pastors were expected to help with this work, if necessary. Information about people’s name, place of residence, birthplace, sex, age, time of onset of the disease, the spouse’s and children’s state of health etc. was to be registered.
The local registration forms were sent to the Chief Medical Officer for Leprosy at the turn of every year. The Chief Medical Officer supplemented and systemised the information in central registers, and one of his main duties was to produce statistics. Tables of People Diagnosed with Leprosy in Norway were published annually and were an important part of the basis for the public effort against the disease. Managing the Leprosy Registry was a demanding task, and its establishment was a pioneer project. The Leprosy Registry, which was probably the first national patient register in the world, has served as a model for corresponding registers in other countries.
Illustrations 1–3: Local and central registers from the Chief Medical Officer’s archives.
Illustration 4: ‘Tables of People Diagnosed with Leprosy in Norway’.
Objects: Wax models of hands. A gift to colleagues in Bergen from the German doctor Oscar Lassar (1849–1907).
From the top down:
A hand where the fingers have been lost due to necrosis.
A hand locked in a position that is typical of the tuberculoid form of leprosy.
A hand belonging to a patient with lepromatous leprosy.
12
(Illustration of the names in the Leprosy Registry, 8,231 in total)
13 Armauer Hansen and the discovery of the leprosy bacteria
In 1868, the young Gerhard Henrik Armauer Hansen (1841–1912) started working as a physician at Pleiestiftelsen for spedalske No. 1 and as an assistant physician at Lungegaards Hospital. He soon expressed the belief that leprosy was an infectious disease. After a few years, Hansen had published several works in which he argued against Danielssen’s theory that leprosy was hereditary.
The second half of the 19th century was a period that saw major scientific breakthroughs in many different fields. Armauer Hansen embarked on his career as a researcher at a time when bacteriology was still in its infancy. In 1873, he made a breakthrough in his search for the infective agent, and in 1874 he published what has been referred to as his magnum opus: A Report to the Norwegian Medical Association in Christiania about a Journey Undertaken with the Support of the Association for the Purpose of Investigating the Causes of Leprosy. Over 88 pages, Hansen set out his microbiological arguments and described his discovery of the leprosy bacteria. This was followed by epidemiological analyses and examples from the Norwegian Leprosy Registry. They showed that the prevalence of the disease decreased most rapidly in those areas where the isolation of patients had been most strictly practised. The theory about an infective agent was based on both microbiological studies and epidemiological analyses.
This was ground-breaking work. Armauer Hansen was the first person to describe a microorganism as the cause of a chronic disease.
Illustration 1: Gerhard Armauer Hansen.
Illustration 2: The leprosy bacteria – Mycobacterium leprae.
Illustration 3: Armauer Hansen’s discovery of the leprosy bacteria was based on both microbiological studies and analyses of the National Leprosy Registry of Norway.
Armauer Hansen’s first description of the leprosy bacteria, found in leprous nodules in the 12-year-old patient Johannes Giil, 1866–1874: ‘Date: 28 February 1873. A nodule from each wing of the nose extirpated with scissors and placed in a meticulously cleaned watch glass; incision through the nodes; no ramollissement; scraped the incision surface using the knife’s edge and placed the scrapings onto a slide and, without adding fluid, spread it out by pressing down the coverslip. Almost exclusively round cells, very few with grains of fat, many fine-grained, others containing many rod-shaped bodies, which in part are delimited by parallel lines, and in part are pointed at both ends, and are then almost twice as thick as the others around the middle. Similar bodies are found in a free state where the pressure from the coverslip has led to the formation of small lakes surrounded by compact cells; in these serum lakes, the bodies move in the way bacteria do.’
Objects: A microscope and specimens on microscopic slides
14 The hunt for proof
Armauer Hansen was aware that he did not have sufficient evidence, and his hunt for incontrovertible proof was all-consuming in the 1870s. He tried for several years to prove the existence of the infective agent by carrying out cultivation experiments and infecting laboratory animals, for example dogs, rabbits, cats, apes and fish. In the 1850s and 1860s, Danielsen had injected himself, his assistant, a ward sister, three nurses and a male assistant at Lungegaards Hospital with blood from patients without being able to prove any infectious effect. In November 1879, Hansen carried out an experiment on a patient at Pleiestiftelsen for spedalske No. 1. The aim was to find out whether Kari Nielsdatter, who had the tuberculoid form of leprosy, could develop a leprous nodule in her eye.
The experiment had catastrophic consequences. Armauer Hansen was taken to court, where he was ordered to leave his position as Chief Physician at the hospital at the end of May 1881. The case against Hansen was the first case concerning patient rights to be heard by a Norwegian court.
As Chief Medical Officer for Leprosy, Hansen led the Norwegian work on leprosy until his death in 1912. In the international work on leprosy in the 20th century, he was seen as a symbol of medical rationality in contrast to the mythological stigma the disease carried. Hansen is probably the most famous Norwegian outside Norway.
Illustration 1: Armauer Hansen was Chief Medical Officer for Leprosy until his death in 1912 at the age of 70.
Illustration 2: Laos is one of 24 countries that have issued postage stamps featuring a portrait of Armauer Hansen. In the work on leprosy in modern times, Hansen has been seen as a symbol of a rational and humanist approach that stands in contrast to the stigmatising myths that have always been associated with the disease.
15 Norwegian leprosy legislation
A new Leprosy Act was one of the most important consequences of the discovery of the leprosy bacteria. Armauer Hansen took over as Chief Medical Officer for Leprosy already in 1875. Based on the discovery of an infective agent, a new Act was passed in 1877. This prevented people diagnosed with leprosy from being lodged with local farmers and left many with no choice but to seek hospitalisation. The Act also contained strict provisions concerning the clothing and bed linen of those infected. Pursuant to the new Act, such clothing and bed linen could not be used by others without first having been cleaned in accordance with the instructions of the local Health Commission. Anyone breaching these provisions could be fined.
When Hansen succeeded in getting a new, stricter Leprosy Act passed in 1885, there was a heated debate that lasted for several years. The new Act provided for forced isolation, a measure that several of Hansen’s colleagues regarded as both inhumane and in breach of the Norwegian Constitution. The provisions on forced hospitalisation were rarely used in the ensuing years, however, although Armauer Hansen followed up patients who were isolated in their homes very closely. The Act from 1885 has served as a model for corresponding legislation in many countries.
Illustration 1: Map showing the distribution of leprosy in 1856 and 1890.
16 The Leprosy Act of 1885
Act concerning the Isolation of Persons with Leprosy and their Hospitalisation in Public Nursing and Curative Facilities etc.
We Oscar, King by God’s grace of Norway and Sweden, King of the Wends and Goths
Hereby make known: That We have been presented with the now assembled Storting’s Decision of the 25th of April this year, which reads as follows:
Section 1. People diagnosed with leprosy shall not be boarded out with local farmers.
Section 2. Persons with leprosy who are in receipt of poor relief shall, insofar as this is not temporary or limited to a small part of their subsistence (…) shall be placed in public nursing or curative institutions. When such poor people are not placed in the above-mentioned institutions, they shall either be placed in special residential facilities or be cared for in such manner as the Health Commission finds satisfactory.
In the event of a dispute about whether the poor relief is only temporary, or whether it only constitutes a small part of the subsistence of the person with leprosy, the matter shall be decided with final effect by the County Governor.
When providing for persons with leprosy, the Poor Commission should take into consideration that spouses who wish to remain together, should not be separated. The decision of the Poor Commission is nonetheless valid even when it entails such separation, if, after hearing the opinions of the parish pastor and the district physician, it is approved by the County Governor.
Section 3. The Health Commission may also order other people diagnosed with leprosy to live in satisfactory isolation from their family and surroundings, such, however, that this does not apply to spouses’ contact with each other. If, in the Commission’s view, repeated orders are not complied with, the person in question shall be obliged to accept admission to a public nursing or curative institution. If such admission leads to the separation of spouses, the Health Commission’s decision shall be subject to the approval of the County Governor, after the parish pastor has stated his opinion.
Section 4. The costs of placing people with leprosy in public nursing or curative institutions pursuant to Section 3 shall be covered by the county or urban municipality in question, such, however, that the costs of readmission of a person with leprosy who has left such an institution without permission from its director, shall be covered by the person with leprosy him/herself, provided that he/she has the required means.
Section 5. Under this Act, transport to the institution in question shall, if necessary, be carried out by the police.
Section 6. Rooms, clothing, bed linen and the like that have been used by any person with leprosy must not be used or handed over to others until they have been cleaned in accordance with the requirements of the local Health Commission. Breaches of this provision shall be prosecuted by the police and punished with fines to be paid to the municipal treasury.
Section 7. Physicians undertaking journeys occasioned by this Act shall be entitled to a travel and subsistence allowance. The travel allowance shall be paid by the State, while the subsistence allowance shall be covered by the county or municipality in question.
Section 8. The Act relating to Provision for Poor People with Leprosy etc. of 26th of May 1877 is hereby repealed.
We have adopted and confirmed this decision as law under our hand and the seal of the realm.
Rosendal Castle, 6th June 1885
Oscar
(L. S.)
___________ ___________
O Richter Lehmann
17 Leprosy in Norway in the 20th century
When Armauer Hansen died in 1912, the disease was in rapid decline in Norway. The number of new cases after 1900 had been moderate, and several of the old state leprosy hospitals had been converted into tuberculosis hospitals and sanatoriums. Many individuals who had leprosy lived for a long time, however, and Pleiestiftelsen for Spedalske No. 1 in Bergen had a separate ward for leprosy until the last resident died in 1973.
The research community in Bergen made important contributions to international leprosy research in the 20th century as well. Hans Peter Lie (1862–1945), who took over as Chief Medical Officer for Leprosy after Hansen’s death in 1912, published several works on leprous infection and the history of leprosy in Norway. In the modern era, the Norwegian Leprosy Registry has been digitalised and has formed the basis for historical epidemiological analyses.
Illustration 1: With 170 participants, the Leprosy Congress in Bergen in 1909 was the largest international congress ever to be held in the Nordic countries. Hansen, sporting a white beard, is seated in the middle of the first row. Hans Peter Lie is sitting on his right.
18 The last residents in St Jørgen’s
The last resident was admitted to St Jørgen’s Hospital on 31 October 1896. The little community died out over the next 50 years. The hospital had 43 residents in 1900, 14 of whom were still alive in 1920, while only 5 remained in 1930. Two female residents lived until 1946. One of them, who was from Fjell outside Bergen, had been admitted in 1891. The other, who was from Eivindvik in Sogn, had been admitted in 1895. After spending more than 50 years at St Jørgen’s, they died within three months of each other at the age of 82 and 78, respectively. After having been in use for more than 500 years, St Jørgen’s Hospital was now without residents.
Illustrasjon1: Bedroom at St Jørgen’s Hospital in the 1930s.
Illustration 2: One of the hospital’s two kitchens in the 1930s.
Illustration 3: St Jørgen’s (St George’s) church. When the hospital’s last two residents died in 1946, St Jørgens hospital was no longer defined as a separate parish.
Most of the texts in rooms A–L are quotes or excerpts from old written sources. They therefore reflect the understanding and perceptions that prevailed at the time they were written. Both the factual information and the terminology used may therefore be contrary to what we know and emphasise today.
A
“Figure Q: Nilla Josephsdotter, 23 years, from Førde parish. This girl with highly advanced leprosy was not born to parents with leprosy, but her maternal great grandmother had suffered greatly from the disease. The girl was admitted to the hospital in 1811 together with her sister, who passed away recently. Another sister, who is married with five young children and lives in the country, has recently started showing symptoms of the disease. The phlegm that accumulates in the chest and air pipe causes frequent congestion and terrible coughing. This is particularly pronounced in patient Q, who, because of the tension caused by the terrible cough, must often fear a swift death from suffocation.”
“Another important fault in how this hospital is organised is that the residents are not kept separate in any way, so that the sick and the healthy, men and women, adults and children live side by side. This will naturally lead to great disorder, and make it impossible to prevent immorality. As a result, it is far from rare for women at the hospital to become pregnant.”
(Army physician Johan Hjort, 1833)
B
“A 13-year-old boy in whom the nodules are fully developed and have become confluent in several places, and the process of ramollissement has started in many of them. His eyebrows have fallen off. He developed leprosy in his sixth year.”
“The progress of nodular leprosy is as follows: Sluggishness and stiffness of the limbs, especially noticeable when the patient has to move after having been at rest for a while, listlessness and drowsiness which, as the disease develops, lead to a compulsion to sleep, at times so pronounced that the patient falls asleep in the middle of a conversation, during work or at mealtimes. The body gradually becomes an increasing burden for the patient, he is troubled by a feeling of heaviness of the limbs, so that, when he has to move, it feels as if he is dragging lead weights, and he feels averse to working; his mood becomes bleak, and things he used to find entertaining are now only a burden to him.”
(Hospital physician Daniel C Danielssen, 1847)
C
“One of the most quaint and generally delightful towns in Europe is little Bergen. Situated as it is between the Sogne Fjords, it is naturally a point of interest to the English tourists in Norway. The town is surrounded by lofty hills up whose slopes its streets and roads climb. The feet of the hills are washed by an arm of the sea, on which may be seen masts of fishing boats through vistas of brilliant green foliage. (…) Norway, the grand and the fair, the land of invigorating breezes, of mighty fosses, of far-stretching glaciers, of salt-water fjords running inland for a hundred and fifty miles; Norway, the health-giving and beautiful, and the last country where one would expect to meet with such an awful disease as leprosy, is to-day in fact its European home.”
(Text by the English Journalist Elizabeth Garnett, 1889)
Portrait: Mathea Mevik was born on the island of Frøya near Trondheim in 1866. In 1913, at the age of 47, she was admitted to Pleiestiftelsen in Bergen, but left in June 1919, a month after the death of her husband, who had been admitted together with her. She returned to the hospital on 1 July 1920 and lived there until her death in December 1941 at the age of 75.
D
“Figures L and M: Nils Knutsson, 27 years old, and Ingeborg Knuts Dotter, 12 years old, from Askevold parish. The two siblings have healthy parents who are still alive, and who are at a complete loss to explain the cause of their children’s illness. The girl, who is only 12 years old, has already had leprosy for two years, and the symptoms are apparent. In addition to a large boil above her right eye, and a horn-like protrusion on her lower lip, which resembles a cockerel’s spur, she has many sores on her body and is in a pitiful state.”
“With the help of these remedies, most of the residents were able to make handicrafts, a task they, in their wretched state, would otherwise have been completely unable to do, as the disease would exhaust their energy and cause them gruesome pain. In relation to their strength, they are industrious people; the women spin flax, hemp and wool, sew, knit and weave woollen bands, while the men make boots and shoes for fishermen and farmers, matches, shoe nails, bowls and buckets, as well as agricultural implements and fishing nets.”
(Hospital chaplain Johan Ernst Welhaven, 1816)
E
“Figure K: Johan Jacobsen, 55 years old, from the parish of Hammer. A man, most of whose fingers have wasted away. At the age of 28, he suffered the first attack in his left thumb, like a small needle prick, and he gradually became lame in his hands and feet, which is manifested in a shuffling gait; otherwise, in addition to red eyes, he has no signs of leprosy on his face and only a few on his hands. Some people with leprosy have no boils on their body, although they have definite signs of leprosy. Like other people with leprosy, their eyebrow hair tends to fall out, and they will feel a peculiar numbness in their legs and joints, like after apoplexy, and a lot of pain in their legs.”
“Despite the best will, insight and effort of the doctor, it is now impossible to cure the living dead. The patient will probably, after having been ill for several years, either be admitted to hospital with far advanced leprosy – as if he were being brought here to die and be buried in town or, if he is wealthier, be hidden away in the country, while relations and friends wait sadly for the day of his death and burial to arrive, while showing concern for his health. A patient with incurable leprosy is thus always miserable, whether his circumstances are good or bad. He must renounce most of his human rights and freedoms; joy deserts him, as does life itself, and it is only in the inevitability of his impending death that he can take comfort and satisfaction.”
(Hospital chaplain Johan Ernst Welhaven, 1816)
F
“Figure X: Magdalena Elerts Dotter, 17 years old, from the town of Bergen. She is an illegitimate child, fathered, it is said, by a French sailor, and brought up by poor foster parents here in the town; it is also assumed that the father of this child may have had a venereal disease, although it cannot be argued that his disease has been the seed of her leprosy. The Poor Commission decided that she was to be fed by the people of the town, but five years ago, when the signs of leprosy became visible on her face and feet, she was brought to the hospital, where, like the other sick residents, she sighs under the burden of her pains.”
“The workrooms, where all the patients who are not bedridden spend their days, are much too small in relation the number of residents and cannot be sufficiently ventilated because there is only one window at the end of the room. The bedrooms are even more unhealthy, since two people sleep in an enclosed space measuring just 336 cubic feet, and they have to keep not only their clothes there, but also food, particularly salted fish and similar foodstuffs, which is why there is a constant strong stench in the rooms when they are closed.”
(Army physician Johan Hjort, 1833)
G
“A 38-year-old man who has the anaesthetic form of leprosy.”
“No one wants to be under the same roof as a person affected by leprosy. No one will eat with him or have any kind of contact with him. He is usually shunned by his family and forced to seek refuge in a remote place where, left to his own devices, he must often suffer the most bitter destitution. In a damp earthen den (a potato cellar), in an open loft or in a byre, the poor individual must spend his miserable days unattended, without comfort, until death puts an end to his miserable life, or a merciful intervention takes place and he is admitted to St Jørgen’s Hospital, where he generally arrives in a wet and frozen state, with none of the basic necessities of life, wearing only rags that have not left his body for months. So filthy and smelly that people shy away from coming near him, his body will be full of sores that, because they have been left untended, have either become gangrenous or worm-infested.”
(Hospital physician Daniel C. Danielssen, 1843)
H
“A 28-year-old girl, whose nodules have become confluent and are covered in thick greyish-brown scabs that can be up to 2 inches high. If these scabs are removed, the nodules have an ulcerous appearance. Both on the surface and deeper down in the nodular mass, there are millions of live acari, which we assume to be acarus scabiei. The scabs consist almost entirely of the dead bodies of these mites. Like the still healthy areas of skin, the few nodules that are not covered in scabs have a dirty greyish brown colour.”
“Post-mortems have been performed on sixteen of the 21 who have died, while, for the other 5, either the patients themselves or their families have refused to consent to a post-mortem. Descriptions of the post-mortems have been entered in the prescribed records and copies have been made of both these patients’ and of discharged patients’ records. Six pathological specimens have been preserved in alcohol, while the other abnormalities found during the post-mortems have either not been suitable for preservation or have been impossible to obtain. At the request of the hospital’s residents, one of them is always present during the post-mortems.”
(Hospital physician Daniel C. Danielssen, 1843)
I
“A 14-year-old girl in whom the blotches or the affected places on the skin are somewhat elevated in relation to the surface of the skin; they have become whiter in colour, and this does not disappear under pressure from a finger. The capillary network is saturated with blood. Small nodules can be seen here and there. They are much paler than the blotches. The eyebrows have begun to fall out.”
“Once leprosy has entered a family, it spreads to all sides in such a horrifying way that no member can ever feel safe. Leprosy can sometimes seem to have died out in an affected family and a generation or two can even seem to be free of it, but this dying out is not real – it is just a lull, a pause taken by this terrible enemy, after which it comes back to life with renewed strength and attacks the third or fourth generation without mercy; for, left to itself, leprosy never dies out, it pursues its prey and all its descendants, and poisons all of them to the last generation. This hereditary quality must be regarded as the inner cause of leprosy, the most terrifying cause of all, for it is often said that the disease insinuates itself unnoticed into families, never to leave them, always in wait for a suitable opportunity to again produce the disease in those who have inherited it.”
(Hospital physician Daniel C. Danielssen, 1843)
J
“Erik Hansen at Haug. His father is a widower and a farmer. He works for his father. The patient is 30 years old. His mother died from a disease of the uterus at the age of 44. His father is alive, is 65 years old and does not have leprosy. The house he lives in is in a very healthy location, on a small cliff at the head of the Nordfjord on dry land about 15–20 feet above the fjord. He has never been badly exposed to the cold or had to eat rotten, pickled herring or other rotten foodstuffs. He has never worn clothes previously owned by anyone affected by leprosy.
The disease has given him a repulsive and ugly appearance.
He longs to be admitted to the hospital in Bergen, but his father cries at the thought of being separated from such a well-behaved son.”
(Dr Fredrik Eklund, 1879)
Portrait: The hands of Jacob Hendriksen Friborg (1856–1885) from Naustdal. He was admitted to Pleiestiftelsen in Bergen on 31 December 1871 at the age of 15, and he lived here until his death at the age of 29. It is noted in his patient records that he was home on leave for around two weeks in summer 1876 and summer 1878.
K
“St Jørgen’s, 10 May 1876.
Since the Lord has separated us so far apart that we cannot speak to each other, I must use my pen to tell you how I am faring under the circumstances, though I must not complain. But, unfortunately, dear sister, I must tell you that it does not take much for us to complain. But if the Lord could open our eyes, we would truly have reason to complain about the state of our hearts. Then we would be able to see how Satan and sin have ravaged us (…)”
(Unfinished letter from a patient at St Jørgen’s)
Portrait: Ole Olsen Grove (1863–1885) from the parish of Voss. He was admitted to Pleiestiftelsen in Bergen at the age of 16 on 21 April 1880. On the same day, Martha Olsdatter Grove, aged 19, was also registered as a patient. We can assume that she was his sister. Ole Olsen Grove died in 1885 after having lived at the institution for five years, while Martha died already in 1881.
L
I dream of when I was a lad,
Of all the happy times I had.
A joy it was to live.
But fortune quickly changed her face
And sorrow then did joy replace.
For me and many more
This fate has lain in store.
I was not yet fifteen years old.
My mind was full of joys untold.
Then were they all cut short.
Pain overcame me and did start
Quickly to pierce marrow bone and heart.
Oh, it was hard to bear
This burden lain on me.
Then for my father God did send,
His misery was now at an end.
His days on earth were done.
Four children stood around his grave
And watched with silent faces brave,
As his tired bones were laid
In their earthly resting place.
From one another we must part,
For it was clear in even mother’s heart
That I was burdensome.
Long hours of vigil has she kept,
And often times till weak has wept
O’er me and other trials
As you know best, O Lord.
For other illnesses found here
Wise doctors on the scene appear,
Who understand disease.
To hospital the sick are brought
And for their plight a cure is sought
Thus their ills are relieved,
And all their wounds are dressed.
We, however, can no doctors get.
Here must we stay and wait and fret,
Until out time is up.
Peter from prison did escape
Because on God’s grace he did wait.
O God, break now the chains
Which bind our limbs with pains.
Sometimes I softly walk about
The silent house at evening time:
Sorrowful sounds I hear.
One bitterly cries ‘woe is me’,
Another sighs and groans
That he must creep away to bed.
Tell me O God – how long?
One is covered in sore on sore,
Another is dumb – speaks no more,
A third hobbles on crutches,
A fourth no daylight now can see.
A fifth all his fingers has lost.
Surely, now it is clear
What we must suffer here.
In St Jørgen’s Hospital here,
Sufferings over a hundred bear
And wait to be set free.
O Holy Ghost our Helmsman true,
Steer us all our sufferings through
And to heaven lead us,
For there we are set free.
From A Lament written by Peder Olsen Feidie, resident of St Jørgen’s Hospital, 1835
Portrait: Nils Danielsen Sætre (1832–1885) was admitted to Pleiestiftelsen on 1 July 1857, as the 12th patient to be admitted after the institution opened its doors. He lived here for 28 years. He died on 13 December 1885 at the age of 53. Like many other young residents, Sætre was registered as unmarried in the patient records and church records, where he was described as a farmer’s son from Finaas parish.
