Dalgamouni wrote that people with leprosy had traditionally been expelled from their homes and made to live in a special town known as “Avaris” or the City of Mud, in the north-eastern part of the Delta. (1) Even in 1938, surveys of the presence of the disease were inaccurate. Franz Engel Bey estimated that there were 3,000 people with the disease, but he reckoned there may be as many as 8,000. Dalgamouni opened a leprosy clinic in 1929. He began treating twenty-four people with leprosy, but by the end of the year was treating 208. (3) He found that most had suffered from the disease for more than five years. He subsequently opened two more clinics in 1930, one at Zagazig in Lower Egypt and one at Suhag in Upper Egypt.
A leprosy colony was built at Abu Zabaal, twenty miles northeast of Cairo, for 100 people. Efforts were made to make this look like “a normal town with normal inhabitants – a town, incidentally, in which birth control will be a primary feature of its internal code.” (8) Two more clinics were opened in 1931. Physicians travelled between the different villages by car so that people could be treated as closely as possible to their homes. In total 4,172 people were diagnosed with the disease.
At the International Leprosy Congress held in Cairo, in 1938, the International Leprosy Association began to develop policies for treatment, surveys, and control. Members included Robert Cochrane, John Lowe, J N Rodriguez, and H W Wade. They stressed that leprosy work was the responsibility of the governments of countries where the disease was common and anti-leprosy work should form an integral part of the public health programmes of such countries. They also focussed on policies to do with data gathering for epidemiological purposes (or surveys), and the changing policies on isolation. The unresolved difficulty of treating the disease was evident in their discussion of the problems of treating people with hydnocarpus oil and its esters and the medical complications that people suffered.
The policy on isolation focussed on open cases as being the greatest danger to the public health. People who were referred to as “open cases” were to be prevented from contacting healthy people, especially children. There were degrees of isolation for different purposes: (a) isolation in institutions, (b) isolation in the patients’ own homes, and (c) isolation in villages. The preference was for voluntary isolation of infective cases, but this was not possible in some countries because of the large numbers of people and the expense. In countries where it was practical and advisable, they recommended that it be voluntary with reasonable periods of leave. They also recommended that countries have multiple regional leprosaria so that people could be close to their homes.
A recent article by Jack Shenker in the Guardian, “Egypt’s last leprosy colony broaches time of integration”, tells the story of some of the people who were isolated at the leprosy colony of Abu Zaabal. (The Guardian 11 October 2010)
“Back in the 1950s this was an isolated community set deep in the Egyptian desert and guarded day and night by camel-mounted policemen.
Now, following significant medical advances and a sea-change in social attitudes towards leprosy, Abu Zaabal’s doors have finally been thrown open again. But, despite their new freedom, its residents are refusing to leave. “This place is paradise,” said Ali. “Why would I want to go?”
The future of the colony is now at the heart of a debate about how sufferers of one of the most stigmatising diseases can be reintegrated into society. “Colonies were built for an era where the only known treatment for leprosy was complete quarantine,” said Dr Salah Abd El-Naby, head of the leprosy programme at Egypt’s ministry of health. “That’s no longer the case.”
Despite specialist outpatient clinics having opened up in every governorate in the country, negating the need for the isolation of leprosy patients, official efforts to bring Abu Zaabal’s days as a separate community to an end have been met with stiff resistance from the patients themselves.
The story of Abu Zaabal begins in 1933, when a leprosy colony was established in what was then a remote wasteland 20 miles outside of Cairo. Originally intended to be a self-sustaining community incorporating 125 acres of farmland, patients brought to Abu Zaabal instead found themselves locked in an open-air prison with little contact with the outside world. Shunned by fearful locals and with few resources to fall back on, the colony soon slipped into disrepair.
“You can’t imagine what it was like back then,” recalled Gian Vittoria, an Italian nun who arrived at Abu Zaabal in 1985. “The government hired nuns from abroad to treat patients here because no Egyptian nurses would come near the place. When we arrived we found it completely trashed.”
Over the past decade, though, a series of dramatic improvements has transformed the largest leprosy colony in the Middle East into a thriving village of 6,000 people.
Three-quarters of them are former leprosy patients who rely on the colony hospital for ongoing medication; many have married and had children, while some outsiders have also been attracted to job opportunities inside the compound. “Everything’s different now,” explained Dr Ahmed Rashad, director of Abu Zaabal’s hospital. He grew up in a nearby town and remembers his school friends spreading dark rumours about the colony, which was situated far from roads and across a river. “Leprosy had a fearsome reputation back then and we were all scared of the patients living behind those walls. Now a lot of money has come in from foreign donors and we have a bakery, a kitchen, a shoe workshop and even a broom factory; even those with quite severe deformities are offered employment tending to the gardens and keeping the place clean.”
Formerly far removed from other settlements, Abu Zaabal has now been enveloped by Cairo’s rapidly-expanding urban sprawl; where empty desert once stood, the capital’s fringes have crept right up to the colony’s doors. The patients’ new proximity to wider society has reflected a shift in global attitudes towards leprosy, also known as Hansen’s disease – one of the oldest medical conditions on record.
In the middle ages sufferers of leprosy in some parts of the world were made to wear bells and use separate currency due to the assumed contagiousness of the disease, and as recently as 1985 it was still considered a significant health issue in 122 countries.
Modern research, however, has shown that 95% of people are naturally immune to leprosy and that the disease is not hereditary; in the past 20 years multi-drug therapy has cured 15 million patients, and the days when forced quarantine was considered the only possible treatment have long been left behind.
According to El-Naby, that is why the residents of Abu Zaabal are now free to come and go as they please. In recent years, less than 200 patients have chosen to move outside of the colony’s walls.
“I spent my youth here, I built a house here, I married my wife here – this is the place I’ve constructed my life,” insisted Radi Gamal, a 40-year-old who was brought to Abu Zaabal from the northern Egyptian town of Beni Suef while in his teens. His friend, Yasin Ali, who earns 150 Egyptian pounds (£16) a month doing plumbing jobs in the colony, agrees. “This used to be a prison, and yes we’re now allowed to leave,” he observed while playing dominoes on one of the colony’s neatly trimmed lawns.
“But outside these walls when I see people who are fine looking at my deformed hands, I feel ashamed. Here we’re all the same, there’s a sense of belonging.”
As in other parts of the world where individuals living with leprosy are concentrated, self-stigmatisation of patients and misconceptions held by non-sufferers about how the disease is transmitted continue to act as barriers to full integration.
“People in the surrounding areas are still afraid, there’s no point pretending otherwise,” said Vittoria. “But today you see many Egyptians arriving with food, clothes and other donations, and the patients themselves have helped build a remarkably successful home. The story of Abu Zaabal is a happy one.”
Mohamed Abdel Khalik El Dalgamouni, “The Antileprosy Campaign in Egypt”, International Journal of Leprosy 6.1 (1938):1-10.