Starting the “New Face for Leprosy” project in Ethiopia

Alex Kumar with Berkie at her weaving co-operative Sept 2018

I visited Ethiopia with Alex Kumar and with Saba, and Berkie’s daughter

 we photographed and interviewed leprosy patients for the New Face campaign. I enjoyed the Neglected Tropical Diseases (NTD) conference. We celebrated Ethiopian New Year with fire in Meskel square.  Ethiopian politics have improved the new prime minister Abiy Ahmed allowing democracy since he took up his post in April.

We launched our New Face for Leprosy campaign in Ethiopia in Sept 2018.  I first visited Ethiopia in 1994 to learn about leprosy and have leprosy projects there since then.  The New Face campaign aims at improving the image of leprosy and we have a small grant from the LSHTM social engagement project to support this work. The project team comprises myself, Saba Lambert our leprosy team member in Ethiopia and Alex Kumar, a doctor and photographer who was my DTMH tutee in 2016. Saba is passionate about improving the lives of leprosy patients through listening to their stories and helping them.  Alex has photographed public health in many settings.

Alex photographed patients in several locations. A taxi driver posed by his income generating vehicle and a boy beside his shoe shine business. Several women run a weaving co-operative producing beautiful white cotton embroidered with Ethiopian designs. Alex spent £100 there on cloth, one of their biggest spenders. I brought home a pan holder decorated with faces styled on Ethiopian murals.  Berkie leads the co-operative and was thrown out of her community when her leprosy was diagnosed, she overcome many obstacles related to her leprosy and now empowers others. She talked at a leprosy meeting and at the NTD conference.  Her daughter is a psychology student and she interviewed patients for us.  Many revealed that they had been suicidal at times.  The taxi driver had been illegally deported from UEA when his leprosy had been diagnosed and we published his story in Leprosy Review. We are translating their narratives and plan an exhibition for next World Leprosy Day (Jan 27 2019). Some of the patients did not want their pictures to be shown in Ethiopia because they had not disclosed their diagnosis to their family and friends, but they did not mind their pictures being shown overseas.  The people with leprosy wanted photos to give their families, these have to depict them looking serious, tthe favoured style for portraits here.

I visited ALERT, the leprosy hospital and AHRI the research centre.  In the hospital I reviewed a young man with bad erythema nodosum leprosum.  This is the painful inflammatory complication that patients may experience after successful treatment.  This man in his late 20’s had completed hid multi-drug treatment but he needed high doses of steroids and nearly died from steroid related complications.

A leprosy research day preceded the NTD meeting. Wim van Brakel presented his findings on stigma showing that 40% of patients had poor mental health and 20% had suicidal thoughts, we found this as well when interviewing patients for the new Face project.  These negative feelings can be reduced by counselling especially when it includes a human rights based approach. I talked about improving the detection and management of reactions in leprosy patients. I have argued in recent talks that WHO should be providing steroids to the national leprosy programmes because so many patients require them to treat the inflammation which complicates leprosy.  

This was my first attendance at the NTD network conference which links the various NGO’s working on NTDS, WHO and governments and promotes cross sectoral collaboration.  This year held in the attractive modern African Union building in Addis Ababa.  I appreciated the strong patient voice in this meeting with Indian patient advocates speaking at the opening session. I enjoyed small group work in a session on telling NTD stories with patient input.  It is vital to talk with the patients about how their story might be presented in the media and be prepared for it to be twisted in its presentation. Pitching stories to the media is a vital part of NGO work and it is critical to have patient consent for their stories to be told. The conference is collectively keen on behaviuor modification especially the WASH (water access, sanitation, Hygiene) initiative. But it is difficult to get people to wash their hands even when there is water.  We are reinventing old truths long known, the Victorians knew that sewerage disposal was important and Balzaget built sewers for London, my grandfather knew that sewerage was important and was designing clean water systems in Indonesia in the 1920’s. more recently  the Indian prime minister Narendra Modi has launched a national access to toilet campaign which should help disease control and empower women in India. Compassion now has its own WHO department.

The first night the Leprosy group hosted a conference dinner with music and photos with a positive image of leprosy. The Trachoma initiative (TTI) hosted the final dinner with many photos of the progress  TTI work  over the years and a quote from my colleague Sol, (Anthony Solomon, an Ozzie who trained with us in London and Is now head of the WHO trachoma prog) about the need for mapping to establish disease burdens.  We were shown a short film about trachoma. Elimination of trachoma is going to be difficult, the elimination promise is reliant on the drug company Pfzier continuing to supply Azithromycin for treatment in communities. I predict this will be needed for decades in Ethiopia to treat infection  and also improved living conditions.

The Conference was advertised as being paperless and one found out about the programme  though an app that I was initially suspicious of but soon enjoyed using.

The conference is keen on elimination of disease and the latest disease to be targeted with elimination was launched, podoconiosis.  I fear that elimination will create the same challenges we have seen in Leprosy where perception of elimination caused a loss of resources and effort for managing leprosy. Podoconiosis can be prevented by people wearing shoes but it will takes decades. Alex visited Baha Dar in N Ethiopia to photograph the podoconiosis work there and found that no-one was wearing shoes even in the programme.

I enjoyed the conference with new  approaches to disease control such as behavior modification and meeting people working in different fields. It was refreshing to be at a medical conference where the patients had a stronger voice and people talked about human rights.

weaving in a co-operative in Addis abba

Blue green woven cloth 

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 19^th 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.

Bergen old City and the Hanseatic league

In 2 days in Bergen we walked around the town, saw the leprosy museum, eat fish, learnt about the Hanseatic league, heard marching bands and a polish string quartet.

We walked round the city with a German guide, Martin who liked the space in Norway.  Bergen has architecture from medieval times to the 21st century including art deco theatres and art galleries.  The city was repeatedly burnt down until the houses were built of stone.  Our best views of the city, harbour and islands were on Sunday from the top of Mt Floyen which we ascended by funicular.

The Hanseatic League was a German trading empire in the 12-16 centuries with a major outpost in Bergen, giving the town trading status. Germans lived and worked in Brygeen an area of houses by the harbour, and only Germans could worship in the German church. An old Breggen houses is now a beautiful museum depicting the cod industry, merchant and trading life. The fire risk was so ever-present in these houses they had no fires, and must have been bitterly cold in winter. Cod were caught in February off the Lofoten islands, dried and exported to Europe, Africa and Brazil for fish soup and baclau. The cod fish was so thick on the harbor that people could walk across it on cod.

The fisheries museum has an excellent graphic of the towns population and housing over the centuries with the regular fires destroying 90% of the city and interesting displays about modern fishing.  We had an enjoyable Sunday morning stroll along quiet streets back to the old town. We saw electric cars, popular because of subsidized electric fuel.

We feasted on fish; mussels and chips in the Fish hall, spicy fish in a in a renovated hall with Stanley Spencer like murals and then a quick fish salad picnic lunch on paper plates in the sunshine but costing £20 in Norway.

On Saturday morning we heard marching bands practicing for a national competition, in the evening in St Georg’s church we heard a Polish string quartet play Brahms, Grieg and Schubert with a beautiful rendition by cello and violin of the Brahms slow movement. 

We had a second visit to the leprosy museum to absorb the atmosphere better.

Bergen is a lovely city, small and compact, with many attractions, art and history museums. I was sorry to miss the Greig museum. It feels well run with good public services especially good public transport including the airport bus.  One can visit the fjords from there so I hope I return soon.

Leprosy patient, Bergen

Leprosy Patient 1870's 

Leprosy Museum, Bergen 2018

Leprosy Museum, Bergen, Irene Allen

St George's church, Bergen

Hospital interior

Capital Ring 6 Wimbledon Park to Richmond

I met Robert and Helen at Wimbledon Park station, on a lovely day for doing the next 7 miles. We-like started along streets with houses, then across a park with a Capability Brown vista. The main part of the walk was across Richmond Park, with a huge sense of space and openness, the city of 7 million people does not feel close. 

We saw deer, 15 antlered males sitting underneath a tree and later on a female herd of 25 and the juvenile males had tiny first year antlers.  We saw a kestrel and woodpecker. The trees were magnificent huge oaks, beeches and weeping birches. At Richmond there was a huge plane tree the largest in London.

We ended our park crossing at Pembroke lodge, a fine 18 century house with nice gardens, sadly only open that day for wedding guests. We walked down into Petersfield, pausing at the 13 c church with ancient gravestones, including one for captain Vancouver who died aged 40. Since Robert is from Vancouver this was a nice link to his origins. We walked past fields with black and white cows and ended the walk with views of the elegant grey stone bridge at Richmond.  An abnormally high tide at Richmond had just washed away the Sunday riverside drinkers. We drank in a riverside pub and walked through Richmond to the station passing a lovely square with old houses around it. There is a fine 19 c theatre and the modern Orange Tree theatre. Richmond station has lovely wrought iron features. We took the modern north London line Overground to Highbury and Islington. I walked home feeling tired and virtuous.

7.0 miles

Aug 21 2016