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 

Ethiopia Jan 2015

Ethiopia: leprosy still a challenge and Tigrayan social-historical interest. 

This series of blogs covers my visit to Ethiopia in Jan 2015. It was a work visit and we had excellent visits to the research institute, AHRI. (Jan 21 and Jan 22 and I went to Tigray for World leprosy Day (Jan 25) 

It is twenty years since I first visited Ethiopia, then as part of learning about leprosy in Africa before starting my consultant post at HTD. On that visit I met Paul Saunderson and we then worked together on the AMFES project, looking at the outcomes of treating leprosy in Ethiopia. That has led to long and fruitful collaborations with Ethiopian colleagues, most recently with Saba Lambert and Edessa Gobena. There have been significant improvements in leprosy management. However this visit also showed that leprosy is still a significant problem in Ethiopia. Diagnosis and treatment has been moved out to the peripheral clinics and people probably do not have enough skills to recognise patients with leprosy early. With delay in diagnosis their disease becomes more severe with nerve involvement. The data that we were shown in Mekelle on Jan 24 also shows that there is still a huge challenge to promote diagnosis and treatment. 

I enjoyed my first visit to Tigray and was impressed by the social and political interest of the Museum of Martyrs. (jan 24) as well as enjoying the smaller scale of the town. I recently read the Ethiopian memoir "Notes from the Hyena’s Belly" about growing up in Ethiopia in the 1970s and experiencing the fall of the Emperor and the confusion of the revolutions that followed. He describes the importance of spirits in Ethiopian life which I have seen in Saba’s household. He captures the youthful enthusiasm for new Marxist philosophies and I could see this in the Tigrayan museum. He also describes the violence of the revolution and the Red Terror perpetrated by the Derg. 

Addis Ababa has changed hugely. When I first went it was easy to drive around and the women bring wood into the city were barefoot. Now they have shoes and there is also an NGO looking after their welfare. The traffic jams are a major irritation in Addis and traffic management is poor. Shopping malls are numerous. There are new glass fronted high-rises everywhere but little evidence of coherent planning. Some high-rises are stranded without further development looking like lone teeth. The restaurants have improved hugely and one can buy pizza everywhere and we ate burgers in a trendy warehouse. (jan 22) There is a huge young population there, brimming with energy and enthusiasm. Sadly democracy has not developed here. The ruling Tigrayan linked government is reluctant to allow an opposition to develop so the forthcoming election is widely perceived as a sham and not offering real political choices. 

This visit combined a comparison with the past, re-affirmed the need for leprosy work and the stimulation of visiting a new place, Tigray 

Notes from the Hyena's Belly: an Ethiopian childhood
Nega Mezlekia

Tigray: World leprosy Day and the Museum of Martyrs

I travelled to Tigray to participate in World leprosy Day and discovered the history of the Tigrayan People’s liberation Front.
 
Up at 5am and out to the airport with AP, she took the flight to Lalibela and I the one to Mekelle. I flew over very dry mountains. Mekelle, the capital of Tigray, is also high and dry. Had breakfast with Saba in her guesthouse, a nice place with a garden where birds flew around and the staff put out the solar panels to catch morning sunshine. We went to the Axum hotel where the Ethiopians were celebrating world Leprosy Day. This included lots of participation from patients and talks from various national and regional dignitaries and was supported by the Leprosy NGO’s working in Ethiopia such as the German Leprosy Relief Association and The Leprosy Mission. There were about 200 people there, as we entered we were given blue T shirts with the wordy slogan “We shall work promote the social and economic rehabilitation of leprosy patients affected by leprosy”. We also had sunshades with the slogan and the logo for the National Ethiopian People Affected by Leprosy organization (ENPAL). The talks were in Tigrayan and unfortunately I was not sitting next to Saba so missed out on the translation. The data from the national Ethiopian survey was presented, too much data on a few slides but it showed that there are substantial numbers of patients in Oromia and Amhara. It was also acknowledged that this data is rather incomplete and determined by the ability of people in the primary health care centres to diagnose leprosy. There were talks by pair of young people who had had leprosy. There was also singing and dancing and ululation. The whole event was fuelled by food, we were given hunks of the Tigrayan steamed bread, then segments of orange, the coffee ceremony was performed in one corner and incense wafted in front of us. At the coffee break we headed over to the hotel area. The people from the villages then squatted on the ground to drink their coffee. There was a sense of participation in the whole event. Saba was asked to give one of the closing speeches in Tigrayn but fortunately a more senior person form WHO then appeared and took precedence. She talked about the importance of being diagnosed with leprosy so that it could be treated early and before complications occurred. A new university is just about to be opened in Mekelle and two leprosy patients were promised scholarships there. The whole event felt African with the massed audience in blue T shirts, the singing and dancing and enthusiasm. We then headed up to an established old hotel made of stone and with a solid feel and a nice verandah where one could enjoy the views. I was still wearing my leprosy T shirt and a woman came over and asked us what we did. It transpired that she had been an OT in a leprosy hospital in Nagpur, India and was now retired and gardening but curious to know about the world leprosy numbers. I had a fish cutlet containing so little fish it would have been better described as a fish biscuit.  

We then went to the Museum of Martyrs, this is a major local landmark and everyone goes there to have their wedding photos done. This is taken very seriously and we saw several very large wedding parties blocking the road up to the monument, one group had the bridesmaids and best men wearing bright pink, others had guest in traditional Ethiopian robes. At the monument some parties circled round in their open cars and others processed on foot with drums and singing. The monument itself was a well designed circular building with large skylights and displays in the ground and basements with a staircase curving down into the basement, the photos documented the rise of the TPLF in the 1970s, many of the photos were black and white and showed the revolutionaries in gatherings, arming themselves, fighting but also educating, receiving medical aid, also about the communications that they made. Afro hairstyles were de rigeur. It was a fascinating history and of course the TPLF overthrew the Derg in 1993. I sensed the Tigrayan pride in their revolution. Saba commented that her mother had supported the revolution and paid for radios which we saw displayed. It was striking how the exhibition transmitted the hope of the revolution. There were also displays about the support from the Tigrean diaspora. Downstairs were the weapons and also displays of the soldiers who died in the revolution. The display was good but it would have been improved by some dates and more historical context. I was very amused that there was also a souvenir shop where one could buy TPLF baseball caps. I also noticed that the TPLF and ENLAP logos wee very similar, the TPLF had crossed a gun and, the ENLAP crossed crutches above a shoe.  

Afterwards we walked through the market past women selling grain, rice, brooms, electrical goods. Saba stopped at a clothes shop to check out the gabayas there. These are traditional Ethiopian blankets that people wrap themselves up in at night or in the cold and made of very fine cotton and here had traditional Tigrean embroidery. I was amused that the Ethiopian clothes were displayed on models with white skin and European faces. We wandered around the streets with flat cobblestones, quite empty after the bustle of Addis. We rejoined our leprosy comrades for a traditional evening meal of nejera and wot, and I had tasty fasting lentils. I talked to the GLRA rep for Ethiopia and also the TLM rep, she is a bright woman doing an MSc in Public health and a project on giving health education about leprosy to school children, she is very passionate about the idea, it is a good idea but only 10% of the cases are childhood so one needs to reach out to a much wider community. We ate in a fine traditional restaurant with wooden round room and a high roof. The Ethiopian enthusiasm for meat was illustrated by the butcher’s shop busy selling meat inside the restaurant. There were also live musicians doing jazz type music with keyboard, guitar and saxophone.  

It was interesting to experience the patient participation in World leprosy day and then see Tigrayan history and culture.

Edessa's work on Erythema Nodosum Leprosum (ENL) in Ethiopia and preparing for World Leprosy Day

Edessa gave an excellent presentation of his work to AP and myself in a very focused session. He has done a huge amount of work on T cells, cytokines and Immune Complexes in patients with Erythema nodosum Leprosum. He is also good at analysing the data. He also has 150 biopsies which he will bring to London. I am also looking forward to the further analysis. All this fits into the bigger picture of understanding ENL that we are developing with the ENLIST international collaboration.

Had lunch with Saba, Leo and AP in a trendy burger bar in an old warehouse. I had a tofu burger, one could not have imagined this 20 years ago. I spent the afternoon communicating with Charlotte Walker of the TLMI in London about a story The Sun will be running on World leprosy Day (Jan 26). They have used her story and lengthened it and he has let them take his photo. She wanted to check a few details with me. 

AP cooked a fantastic Greek supper with spinach and feta pie and stuffed peppers.

Innate immunity in leprosy then a beauty parlour visit.

This post covers a trip to Ethiopia with Anastasia Polycarpou, my Greek Cypriot post doc. We went to review the progress of Edessa Gobena, my Ethiopian PhD student and also to start a project that AP has got funding for. We stayed with Saba Lambert and her family, her engineer husband Gaby and her 4 year old son Leo. It is 20 years since I was first in Ethiopia; I came to ALERT and AHRI in 1994-5 to experience African leprosy before taking up my London consultant leprologist post. I could not have imagined then that I would have been returning over the years. This visit I have been consciously comparing Ethiopia now with that I visited 20 years ago.

Saba and I relaxed and swam at The Hilton in the volcanically heated water, very beneficial after a long haul flight.

On Wednesday morning we went to AHRI (Amauer Hansen Research Institute). Edessa showed AP around and the ARHI labs impressed her, they are more spacious than the London Labs and it is easier to work on leprosy here because one does not have the constraint of M. leprae being a Cat 3 pathogen.  AP gave an excellent presentation on two aspects of her work, the relationship between Toll Like Receptor 4 and M. leprae and the other on her proposed FCy receptors in ENL project. The latter was laid out well with 5 hypotheses and proposals for answering them. The audience was lively and engaged asked lots of questions. Later we discussed the project with the two AHRI scientists Rowley and Kidist and how we could maximise ARHI involvement, through a student or other collaboration. Kidist was cautious, Rowley optimist, as per their national stereotypes (Ethiopian and American). This is a good project and could spin off in many directions. I was very pleased with the day, AP has brought something new and useful to the group and it looks as though we could do major work here in Ethiopia. This all ties in with the growth of our international collaboration on ENL, ENLIST which will facilitate this.

Saba, AP and I celebrated with an ice cream and then a beauty session, I had my eyebrows plucked in beauty parlour in a new shiny glass fronted mall. I have become very aware of all the beauty parlours around Ethiopia and the adverts for hair and skin products. Reading “Americanah” by the Nigerian Chinamanda Ngozi Adiche made me aware of how important hair salons are in Africa and this is true in Ethiopia too

Gaby told me how the Chinese have priced the Africans out of the road building business so he has moved into town planning. The Ethiopian cities are growing fast, Addis is really sprawling with new high rises buildings dotted around randomly and new glass fronted malls beside the road. It has modernised but has also lost the charm and beauty of 20 years ago. Gary's team are making a presentation to a big workshop with the Ministry of Industry and Development and including the PM in the first week in February. Big projects and I hope they work out for him.