Sunday, 18 November 2018

Bergen – Norway’s Leprosy Museum

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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