I visited Bergen in June 2018 with Irene Allen from Lepra to
explore the leprosy museum. This is an important part of the leprosy historical
record and had leprosy patients for over 200 years. Hansen worked there showing that leprosy was
caused by bacteria, newly discovered in the 19 century. Later leprosy became a curable infection and
no longer considered to be hereditary.
It was a moving place to visit. The last patient died in 1947. I was fascinated by the story of scientific misconduct
over leprosy and patient treatment there.
We arrived in Bergen at midnight but it was still light and a vast
full moon hovered in the sky. We explored
the harbor and had an expensive beer in a lively bar.
The leprosy hospital was established in 1760’s and patients had their leprosy manifestations
managed. In the 19th century
Norway had unexplained high rates of leprosy with Norwegians acquiring their
disease there. A Norwegian leprosy register was set up in 1856 and maps created of district leprosy rates.
Here in 1888 Hansen showed that leprosy was caused by a bacterial infection.
This changed leprosy into a treatable infection (1946), it had long been feared
as hereditary. The leprosy hospital is a short walk from central Bergen. The religious origins of the leprosy hospital
are visible with a large sixteenth century church, St Jorgen and hospital with other
buildings kitchen, brewery and herb garden making the complex self-sufficient. The
main museum has
two bedded cells on two floor all visible and it feels is
prison-like. Banners hung in the cells with 19 century paintings of patients
and Norwegian narratives. The church had boxed pews and a 18 century altarpiece
showing Christ treating leprosy patients. Patients sitting behind the altar were
partially hidden from the congregation. The herb garden is well tended and we enjoyed
sitting there. We were guided by an Estonian helper who spoke good english.
We explored cells and the banner displays reading the Norwegian
translations. There were interesting scientific disputes and bad ethical
behaviuor in the 19 th century. Hansen was a young physician challenging his
master, Daniellson (also his father in law) over his antiquated beliefs and
using the latest science, bacteriology, to back his claims. Hansen argued that
leprosy was caused by bacteria and took material from patients. The German
doctor Neisser created a scientific dispute by taking the samples Hansen showed
him as possibly causing leprosy and visualising the bacteria by using the pathological
stains invented in the 19 century. He then claimed in a journal to have
discovered the cause of leprosy giving himself scientific priority. Hansens’
discovery was later re-accredited to him. Hansen also behaved unethically. He
wanted to demonstrate the transmissibility of leprosy and he transferred potentially
infectious material from a patients’ nodule to a woman’s cornea to see if she
developed leprosy. She already had one type of leprosy so this was not a good
scientific model to choose. He was sued by the woman and his right to look
after leprosy patients was removed. It
was impressive that a poor woman had done this. It is surprising that Hansen
still has his name associated with the disease when he did these unethical experiments.
I sat in one of the cells and imagined being a patient. I could
have been a Norwegian farm worker in my twenties and developing numbness in my
hands and feet. I would have seen my
doctor who would have been puzzled by my symptoms. It probably would have taken a few years for
my medical problems to be recognized as leprosy and then I might have been
moved to the leprosy hospital. I think the strict regime would have upset me.
Because there was no treatment I would have stayed in the hospital for the rest
of my life. I wonder how often family visited the inmates?
It was v moving being there again and a strong sense of the
people who were patients there. It captures the scientific aspects of leprosy
medical history well. There was a piece of modern art depicting the names of
everyone who had leprosy in Norway. The
beautiful museum is part of local culture and we saw a striking young couple
(Norwegian and African) having their wedding photos there. So the museum is now
an acceptable part of Bergen history.
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