Baton Rouge: US Hansen’s patients, Southern Hospitality, Mar 2019

I visited the US National Hansen’s Disease service, United States of America in March 2019. I enjoyed seeing patients there and interacting with the physicians and researchers. I enjoyed Cajun food and Southern hospitality. Barbara Stryjewska and John Prestigiacomo are the United States Hansen’s Disease physicians in the national centre in Baton Rouge and we discussed their patients. Many came from Costa Rica, Micronesia. Marshall Islands, and Mexico. They genotype the leprosy mycobacterial strains infecting the patients. One patient from Mexico had both M. leprae and M. lepromatosis infection and was experiencing typical leprosy. I lectured on my work describing my voyage into leprosy with my research and clinical work. I aimed to improve patient outcomes. My map showing the UK patients coming from 34 different countries was admired. I talked about using single monthly doses of Rifampicin, Oxfloxacin and Minocycline as treatment. Barbara took me to Houmas house, an old plantation house, with southern elegance and fine gardens. The evening light was beautiful on the azaleas. We walked around the grounds. Then had interesting cocktails with gin, lime juice and Prosecco in the elegant bar. We shared crab claws and shrimps and I had shrimps on aubergine. Barbara left Poland in 1988, came to the US and retrained. She is a thoughtful clinician and worries about the patients and the adverse effects they experience from the steroid drugs needed to treat leprosy reactions The next day we talked and saw videos of American patients who had acquired their leprosy in the USA. This is due to infections carried by armadillos. One seventy three yr old man was diagnosed late after presenting with a Borderline Lepromatous reaction with oedema and pain and it took him months to be diagnosed, not surprisingly no-one suspected leprosy. He was diagnosed when a skin biopsy was done to investigate his unusual skin rash. A woman from Oregon developed leprosy after a visit to Louisiana 20 yrs ago, maybe having encountered armadillos in Louisiana. Probably many people are infected with M leprae after encountering armadillos but only a few develop disease. The videos of patients are great teaching tools. We lunched in a local cafe, deep fried oysters as a starter then catfish with rice and were given with a discount for us being in US forces through working for the USNHD. The big cities of Los Angeles, Chicago, New York and Miami have the highest numbers of leprosy patients with many patients with reactions, like the patients in my clinic in London. I hope they will start using the Enlist Severity Score in the USA, we developed this as a tool for monitoring disease severity. The social worker was interested in the New Face for leprosy and some patients there might participate. I shared the Lancet New Face article with some of the patients here, Pedro and Dante who were interested in the project. In the afternoon we drove downtown and scrambled up onto the levee next to a full Mississippi. We had supper of sushi on an open air terrace with a beautiful view of the river. Tugboats were plying up and down the river. We were close to a huge bridge with boats moored, a destroyer and a river boat. The sun set and the river went many shades of blue. It was a beautiful moment. Working for the US government gives them safety but many restrictions. They attend few conferences, and these have to be approved. The next morning, I meet with Linda Adam’s group of scientists at the Louisiana State University. They are working on armadillo models of neuropathy, doing drug testing for leprosy in the nude mouse model, and doing M .leprae strain typing, there are armadillo associated strains which are passed between humans as well. M lepromatosis, causes many cases and all types of leprosy in Brazil. I saw the armadillos, pairs of brothers living in cages. They beat their feet against the cages, a sad sound. I enjoyed these days in Baton Rouge, seeing patients in the USA, and the armadillos are transmission of leprosy here. I enjoyed talking to the small group of leprosy scientists here and appreciated the evening beauty of the Mississippi. Sadly John died of Covid in September 2020. He is one of the few people I know to have died. He was very devoted to his Hansen’s patients. He also had diabetes.

Carville – unique history of leprosy and a Louisiana leprosarium March 2019

Carville is an important museum located in the first state run leprosarium in the USA. I visited it with Deanna Hagge after seeing contemporary leprosy patients in the USA Hansen’s Disease service in Baton Rouge. It is on the banks of the Mississippi in cotton growing countryside. I first visited Carville in 2005 when there were still a couple of elderly leprosy patient living there. The bright southern light lit the long corridors, and I imagined the patients who had lived there. My memories were strengthened by photos of that visit in my London clinic. Now the site is a museum and captures the life and the history of Carville, Louisiana with patient stories. There were leprosy cases in the Southern USA at the end of the 19 century who needed treatment, so an institution was established for them, initially run by Catholic nuns, the “Sisters of charity”. In 1917 the institution became a state institution and later a federal one. There is an introductory video on leprosy with the commentary by David Scollard (former Head US of Hansens Diseases Service). The display captured the ingenious adaptations patients made to help their lives including special wheelchairs. The studies on developing an effective treatment for leprosy where done here, promin, an early injectable leprosy antibiotic in the 1940’s. Racism was present with segregation of black and white patients, requiring duplication of everything for staff or patents. Black patients experienced doubling of stigma. The changing governance of leprosy at Carville, as a US government institution was shown in posters. The role of the sisters of charity who initially ran the leprosarium was beautifully explored in documents and posters. “The Star”, a leprosy patient lead publication was written and produced here and they have all the copies. It was an important patient voice and I explored patient stories. The role that veterans played was discussed as patients and advocates. Surprisingly there is no information about where the patients came from and where they had acquired their leprosy. I am interested in this because in London, UK I have seen patients from 34 different counties. Contemporary leprosy with current treatments as recommended by the World Heath Organisation and provide free to government leprosy programmes everywhere was explained. I featured in posters I made with Sandy Patience in 1996 (funded by Lepra) in the media section. Patients were given a number and often took aliases on entering the institution. Inmates escaped to get drunk, have sex and gamble and could then be imprisoned. The need to escape to do these activities gives it a uniquely American perspective. Mardi gras is important In Louisiana and they celebrated other festivals such as Halloween. They played football and golf and the other local teams had to come and play in Carville, occasionally the Carville teams won. The museum concluded with information about contemporary leprosaria with posters on treatment and biology. The work on the museum has been done by Elizabeth Schnieder, a historian. We drove round the institution, stopping at the infirmary and the cemetery, with 400 US military style gravestones. The museum was rich in detail and I hope I can visit again.

Diana's Year 2018

The year in brief:  I had a wonderful Himalayan experience walking in Ladakh. I enjoyed hosting friends in Brecon. I worked to improve the image of leprosy “New Face for Leprosy” in Ethiopia. I protested with 700 000 others against Brexit on the people’s march.

In August I walked for 10 days in Ladakh, a dry Himalayan area in India bordering Tibet and Pakistan. There were 16 people (19-66 yrs) on an organized trek. Ladakh has high dry mountains with beautiful rock formations.  Leh, the capital is at 3200m and we walked to above 4,000m. We drove up to the Khardung La pass, the worlds highest café and had lemon tea there. The rocks colours range from red to brown, beautiful to photograph.  The highest points are decorated with Buddhist prayer flags. We saw beautiful Bhuddist monasteries. The Indus starts up here and the only trees are along the river. We walked, camped and had interesting village homestays and talked to local people. The locals were harvesting and drying their apricots; which I brought home for my neighbours. They are Buddhist and so much less pushy than elsewhere in India and their social structures are kinder to women. 

My latest project is called “A new face for leprosy”.  When new leprosy patients go on the Internet they see only pictures of patients with no fingers and toes; whereas contemporary leprosy is a treatable infection. I tell new patients that they have a 21 st century curable infection and most will not develop disabilities. The NGO’s working in leprosy need these graphic images to raise money. My patients have overcome the stigma of leprosy and progressed with lives and careers.  We aim to capture this positive image of leprosy without stigma.  Myself, Saba Lambert one of my team based in Ethiopia and Alex Kumar, one of my DTMH students spent time in Ethiopia in Sept photographing and interviewing patients.  We plan an exhibition for World Leprosy Day on Jan 27 2019 when there is media interest in Leprosy. I celebrated the Ethiopia New year in Sept in Addis Ababa with candles, bonfires and fireworks in the central square. 

My friend Steve Walker was appointed to the tropical dermatology consultant post at Hospital for Tropical Diseases (HTD), he is the first black consultant at HTD, I was the first woman consultant in 1994.  Steve has worked with me on leprosy for many years and will be taking over the NHS leprosy work. I shall retire next June. I shall stay connected with leprosy work, a new project will be writing a book about leprosy based on patients’ stories. This will take me back to the places I have worked in the past.  I plan to cross Russia on the trans-Siberian train.

I have explored black culture this year after hearing my hero David Olusoga’s talk at Hay about his book “Black and British” about the under-recognised contribution black people have made to British history. I saw the play the” Secret Lives of Baba Segi’s Wives” (at The Arcola) by Lola Shoneyin, about a Nigerian man who takes more wives to mask his infertility whilst they find their own solutions. The audience included appreciative Nigerians enjoying the tale and the music and ready to dance.  The novel “Stay with me” captures the devastating effect infertility has on families and the lies that are told to mask it, by Ayobami Adebayo a 30 yr old Nigerian writer. 

My friend Iain Reddish died rapidly from bladder cancer in February. We were friends for 25 years, having met canvassing for the Labour party in Islington in 1992. He moved to Amsterdam and I visited him there often, also enjoying reconnecting with my Dutch roots. He was my first stop for political analysis and reflection. He had a humanist funeral In Holland with people speaking briefly about this colourful, warm, thoughtful man who wore amazing clothes.  I wrote an obituary, with friends, published in The Guardian on Apr 20^th.  His ex-partner (Alesha) and a Dutch resident had euthanasia in June and escaped a debilitating neurological illness. He is the second of my friends to die in Holland from euthanasia and in both cases it given them peaceful final days and they said goodbye to family and friends.  

Using my mother’s house in Brecon for hosting people has been a pleasure.  I love showing people around Brecon, walking in the Beacons and sharing good food beside the River Wye.  During the Hay Literary festival I had many guests including Julia and Steph from Paris, We heard Ben Zephaniah give a wonderful account of his life.   Neil Young looks after the garden. I shall make the house more mine with my own pictures and furnishings.

Gardening in the community project in Arlington square connects me with my neighbours.  The trees there had fine red autumnal colours. I have a new gardening project to nuture and improve, Union Square, the square closest to my home. It is smaller and has visitors with dogs and the beds lack colour.  We are now official and the Friends of Union Square and will be gardening there.

I enjoyed celebrating 70 years of the NHS and I took cakes from the Labour party to my local practice and the HTD. I worked for the NHS for 37 years, over half of its life.  I fear for the next 35 years. It is in a fragile state. The Owen Sheers poem about the NHS had scenes from Wales including Nevill Hall hospital, Abergavenny, captured the uniqueness of the institution and how important it is to ensure that it lasts another 70 years. The effects of 8 years of austerity are visible with poor social provision and rising homelessness. I despair over Brexit and the many ways it will harm the country.  I am frustrated by Jeremy Corbyn’s failure to give a clear opposition voice against Brexit. I was energized by the Anti-Brexit march, 700 000 people marched peaceably and good naturedly through central London. 

Cultural Highlights included hearing “The Rape of Lucretia” by Britten at the Arcola theatre, and seeing the play “ The Jungle “ about life in the camp at Calais which I saw with my cousin Jane and nephew Matthew. This highlighted the survivors tales of people living in the camp.  I had excellent weekends away with friends, enjoying concerts at Snape Maltings  and eating lobster in Suffolk with Rita. Irene Allen and I found the leprosy museum in Bergen with its pictures of 19 century patents very moving. I was walking in Haut Savoie with Les and Vera when France won the World cup ad shared French joy. I explored a volcanic lake in Tanzania with Saba.

Enjoy the Solstice and may 2019 be a good year.

https://www.theguardian.com/environment/2018/apr/15/iain-reddish-obituary

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.