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Ebola’s stigma recalls leprosy

By Caroline Hurley

Ebola was first identified in 1976 in Sudan in a cotton factory, with bats suspected as the reservoir species. The disease typically occurs in outbreaks in tropical regions of sub-Saharan Africa, though also in Venezuela, Cambodia and Indonesia. The largest outbreak so far is the ongoing epidemic in West Africa, which is centred in Guinea, Sierra Leone and Liberia, and has occasioned 16,203 reported cases and 7,275 deaths. President Obama has called it “a horrific disease”, “a public health emergency”. The international community has been providing aid, especially after the death of Duncan Thomas in the US in early October. The Irish Department of Foreign Affairs donated €200,000 in November.
The paranoia and the stigma associated with Ebola are nothing new – they parallel historic, and some contemporary, reactions to leprosy. Moreover the historic primary incubator for both is poverty
While Ebola is a virus, leprosy is a bacterial infection. The incubation period of ebola is two days to three weeks while the incubation period for leprosy is around five years. And while Ebola is highly infectious, 95 per cent of people have natural immunity to leprosy. Unlike the Ebola virus, leprosy itself seldom leads to death. It is a disease of the skin and nerves that, if untreated, often led to a lifetime of severe disfigurement. There was no effective medical treatment until the development of the drug dapsone in the 1940s. But as yet there is no effective treatment for Ebola.
With luck and vigilance Ebola will never reach Ireland, but leprosy affected millions of people all over the world, including here. Just 150 years ago, in January 1864, notice of the death of a young woman from leprosy appeared in the Limerick Reporter & Tipperary Vindicator. Leper houses in Limerick and Waterford were mentioned. Leprosy predominated as Ireland’s national disease since at least the time of St Patrick who, like St Brigid, healed lepers. Indeed it was widespread until quicker killers such as the plague, tuberculosis and famines claimed more casualties.
Although in 1970 there were over ten million cases, the World Health Organisation (WHO) now estimates that globally less than 200,000 people have leprosy, including 400 new cases annually in the US. Aid workers contest the figure and the methodology used to reach it. The WHO definition of cure, bacterial negativity, disregards complex after-effects, and only entitles patients using multi-drug-treatment (MDT) to be registered. Stigma still poses an obstacle to treatment-seeking – and the statistics.
Moving into his new office Ireland’s Minister for Health, Leo Varadkar. may have been aware of the reputation Hawkins House has as a sick building, but less enlightened about other facets of its history. For centuries the area hosted a residence for lepers. Until 1815, Townsend Street, which adjoins Hawkins Street, was known as Lazar’s Hill.
The so-called “lane leading to the Long Stone”, beside the Viking harbour built in 841 became known as Lazar’s Hill after 1220 when Henry of London, Archbishop of Dublin, established a ‘lazaretto’, a quarantine station for maritime travellers. This particular hospice sheltered leprous pilgrims sailing to Santiago de Compostela for a miracle cure. Immigrants assumed infected were probably quarantined there too. Floods and storms wreaked periodic damage on ‘Lazy Hill’ until 1662 when William Hawkins had a wall built, running from Corn Exchange Place to modern-day Temple Bar.
As detailed in Gerard A Lee’s 1968 book, ‘Leprosy and Leper Hospitals in Ireland’, many place names refer to patron saints associated with leprosy, such as Mary Magdalene, Lawrence, Nicholas, Stephen and Lazarus/Bethany (‘beloved of Christ’, a term  often applied to lepers). Place names reflect the Irish word for infirm or leper, lobbar – Knocknalour, Dromalour, Flowerhill. Many townlands recall the old word for hospital and hotel – spital.
Several other Dublin hospitals specifically catered for leprosy cases. St Stephen’s Hospital, which gave St Stephen’s Green its name, was situated on Diggis Lane where Mercer’s Hospital was subsequently built. The intended transfer to lands bought at aptly-titled Leopardstown (lepers’ town, Baile An Lobhar) never took place. The Order of Hospitaller Knights of Jerusalem ran leper-houses in Kilmainham, and Chapelizod, meaning ‘leper church’/ Séipéal an Lazar.
Leprosy is called The Great Disease in both Sanskrit (maha rog) and Anglo-Saxon (seo mycle ail). The Indo-European word for the condition – leper – means something that peels off. It is liber, for tree bark, in Latin.
Sometimes normally-aloof aristocrats were spurred to compassion by the affliction, as necessity dictated. Around 1230, Cashel Leper Hospital was built by Sir David Latimer after his daughter contracted it. King John set up St Stephen’s Leper Hospital in Waterford when he and his family erupted in sores.
In history, leprosy became endemic around the river Nile from 3000 B.C, dreaded as the ‘death before death’. Jesus famously cleansed and healed a leper, in the New Testament of the Christian bible.
The first-century physician, Aretus, bemoaned callous public attitudes to lepers. By the time of the Crusades, the disease had reached epidemic proportions in Europe, provoking laws requiring exclusion and isolation, in line with seventh-century decrees restricting leper marriage. Banished individuals were obliged to broadcast warnings, wear long cowls, and sound bells or wooden clappers when others approached, after undergoing living funeral ceremonies. Whoever refused to go, to beg and forage for a precarious existence, could be harshly dealt with by statute, even put to death. Mere guesswork passed for most clinical diagnosis.
The rise of leper houses in towns across Europe started in earnest when early Church Councils in the sixth century committed to the cause. As early as 869 Arlaf the Dane recorded the destruction of leper houses in Ireland. Some blamed the Irish for an outbreak in Norway after Viking raids here around 1000 A.D.
Leprosy rapidly spread from the tenth century and claimed 10-50 victims per thousand at its thirteenth-century peak before retreating.
The 273 leper houses in England, rapidly becoming redundant, had mutated into almshouses by the fourteenth century, harbouring hardly any leprosy cases. The suppression of monasteries in 1540 brought destruction and closures, while concerns increased about more active diseases.
Leprosy seems to have inspired the birth of organised charity. Crusaders in Jerusalem drew up a twelfth-century charter to govern the Order of the Knights of Saint Lazarus. They obtained royal seals and attracted donations from all over Europe to build leper shelters. Knight Orders of Rhodes and Malta followed suit, espousing chivalrous humane values such as those championed in for example Faber’s nineteenth-century poems, ‘The Knights of St. John’, and ‘Sir Lancelot’.
With effective treatments, reduced prevalence and progressive policies including integration and independent living, the outlook for leprosy has never been better.
The disease continues to baffle medical researchers trying to cultivate the microbe and decipher its mode of transmission. Dr Meny Bergel suspects it could be an opportunistic metabolic disease, while others see an interaction with immune resistance that transmutes it into tuberculoid form. Uncannily, Dr Mercier, noting abundant past accounts of leprosy, but not of tuberculosis, expressed a similar hypothesis in his 1918 lecture: “…that the bacillus of leprosy has changed in the course of time into the tubercular bacillus, that leprosy has disappeared in one form only to reappear in another. That strains of micro-organisms do undergo modifications…”.
This idea from evolutionary philosophy is accepted for newer diseases like HIV. Scientists describe ebola, like HIV and herpes, as an intelligent virus that, instead of mutating, evades immune attacks through complex cell attachment behaviours, just as many previously responsive infections have become unaffected by antibiotics.
Ultimately, leprosy and Ebola have both been labelled diseases of poverty. The best vaccines generally are greater equality and distribution of wealth to the poorest nations on earth. Meanwhile those treating, and indeed reporting on, Ebola can learn from the perennial experience of leprosy. •