The Last of the Lepers
The Last of the Lepers
Available at: http://egypttoday.com/article.aspx?ArticleID=8091
Photo Credit: Mohsen Allam
Egypt’s leper community is benefiting from better treatment and improved facilities in recent years despite continued isolation and widespread misperception about the disease.
Sayed Ahmed Sayed, now 88, was only 25 when he made his way to Egypt’s leper colony, and there he has remained for the last 63 years. Blind, with a disfigured mouth, half a nose, no fingers and no legs, he is one of Egypt’s gozam, or leprosy victims — one whose body and face have been ravaged by the illness, leaving him a faint shell of a man.
“We are the victims of this disease,” he croaks. “There was no treatment in my time, now if they catch it early there is. But are my fingers ever going to grow back again? Will I ever be able to shower alone? Never.”
Sayed spends his days in a bed in Abu Zaabal, the biggest leper colony in the Middle East. Located in Qalyoubeya, 40 kilometers outside of Cairo, Abu Zaabal was built in 1933 to house those infected with leprosy. Rounded up by police, they were brought to the colony, ostracized and quarantined. Many have remained there for a lifetime.
The 75-year-old colony had fallen into a state of disrepair over the decades, but has improved in the last five years under new management. It is now a self-sufficient community, with a fully equipped hospital housing nearly 1,000 patients, a huge kitchen, laundromat, prison, bakery, pre-school, mosque, library, cafeteria and even a barber. The colony also includes the adjacent village of Abdel Menem Riyad, where cured leprosy patient usually opt to live. Altogether, it is home to approximately 3,000 people.
One of the oldest and most feared diseases in the world, leprosy is widely misunderstood. Curable, non-infectious if treated, and non-hereditary, there is no reason why its sufferers should be shunned from society.
A Disease Misunderstood
Leprosy is a chronic disease that attacks the nervous system, particularly the nerves in a person’s hands, feet and face. The word ‘leprosy’ derives from the ancient Greek word leper, which means scaly. Leprosy is also known as Hansen’s Disease, named after Dr. Armauer Hansen of Norway, who discovered the bacterium responsible for the illness in 1873.
Caused by bacteria similar to the one that spawns tuberculosis, leprosy was, until this century, thought to be incurable and highly infectious. While its main initial symptoms are skin lesions and lack of sensation to heat, touch and pain, if diagnosed early, leprosy patients are able to evade the deformities and disabilities that characterize the disease and live normal lives. If left untreated, leprosy leaves its sufferers deformed and crippled, with no feelings in their limbs, or no limbs at all, and can cause permanent damage to the skin, nerves and eyes.
But perhaps the harshest blow is that victims become unwilling members of one of the most marginalized groups in society. One of the oldest recorded diseases, with its first known written reference dated to 600 BC, leprosy is the only disease mentioned in all three Abrahamic religions. History attests to the fact that lepers were social pariahs; in the Middle Ages, for example, leprosy victims had to wear distinctive clothing, were declared legally dead, forbidden from entering a church or a gathering of people, forced to carry a clapper or a bell to warn of their approach and even blamed for contracting the disease.
In 1897, experts at the first International Leprosy Congress agreed that the disease was not curable and that its patients must be isolated. Today, the term “leper” still carries pejorative connotations and is used in popular culture to refer to outcasts. In an episode of the sitcom Seinfeld, for example, a character compares a high concentration of unattractive people to a leper colony.
The World Health Organization (WHO) estimates that leprosy has currently left between two to three million people permanently disabled. According to the WHO, the leprosy bacterium is most probably transmitted via droplets from the nose and mouth during close and frequent contact with those who are untreated. It may take as long as 20 years for symptoms to appear, though the incubation period is generally three to five years.
Treatment became available in the 1930s with the introduction of a drug called Dapsone, but a resistant strain of the leprosy bacteria eventually evolved and the drug was deemed ineffective by the 1960s. Two other drugs, Rifampicin and Clofazimine, were discovered in the same period and used with moderate success until 1981 when the WHO began providing multi-drug therapy (MDT). MDT is a combination of the three drugs that kills the pathogen and cures the patient within six to 12 months, depending on the strain of leprosy contracted. After the first dose, the patient is no longer infectious.
Over 14 million patients have been cured in the last 20 years and the infection rate has dropped by 90 percent. In 1985, leprosy was still considered a health problem in 122 countries; today, that number has dropped to six. These six countries account for 75 percent of all leprosy cases worldwide.
In 1991, the World Health Assembly of the WHO passed a resolution to eliminate leprosy as a public health problem by 2000. In 1995, it began to provide free treatment to leprosy victims worldwide, initially through a drug fund provided by the Nippon Foundation and, since 2000, through an MDT donation provided by the Novartis pharmaceutical company and the Novartis Foundation for Sustainable Development. The program will run until 2010.
Today, only four countries — Brazil, Mozambique, Nepal and Tanzania — have failed to reach the WHO’s standard for elimination, set at one case per 10,000 people. Egypt eliminated leprosy by these standards in 1994.
Leprosy in Egypt
Leprosy ravaged the ancient civilizations of Egypt, China and India, who were some of the first to record its existence. Today, approximately half a dozen leper colonies remain in the world, and Egypt is home to one of the biggest.
In 2006, according to the WHO, Egypt had less than 1,000 new infections for the first time in its history, with the rate steadily declining from 1,412 in 2003 to 1,216 in 2004. In 2007, Egypt registered 950 new cases and a cure rate of 84.2 percent.
This is in sharp contrast to 1979, when Egypt had 60,000 new registered cases of leprosy. Understanding the magnitude of the problem, the Ministry of Health established a department to combat the disease and signed an agreement with the German Leprosy and Tuberculosis Relief Association (GLRA/DAHW), the Damien Foundation in Belgium and Caritas Egypt to establish socio-medical programs in Egypt.
Dr. Salah Abd El-Naby is in charge of the ministry’s department to combat leprosy and is very pleased with the results. “We managed to eliminate leprosy — according to the WHO’s standards — by 1994 overall and in 1998 for governorates where the disease was harsher, like in the Sa’eed [Upper Egypt],” he says. “Now, our program to fight leprosy on the national level covers all services that deal with the disease from diagnosis until after the patient finishes treatment and even post-treatment.”
The program involved the building of fully equipped clinics for leprosy treatment in 16 governorates. In governorates where the disease is more prevalent, one clinic may have several branches. Treatment is free, and the ministry even covers travel costs. “A quick trip to a clinic, you take medicine for six to twelve months, and you’re cured,” Abd El-Naby says.
“[Fifty years ago], the understanding was that the patient would never be cured; he would always be a leprosy patient and he would be on medication forever.”
Because of the improvements in treatment in recent years, Abd El-Naby also believes colonies are no longer necessary and should be cleared out.
“The leper colonies were built when the only treatment was isolation,” explains Abd El-Naby. “It was as if the patient had committed a crime; the police would arrest him and take him by force.”
In addition to the Abu Zaabal colony in Qalyoubeya, a leprosy center exists in Amreya, Alexandria, though it is more of a hospital, which can accommodate no more than 50 patients.
But when the suggestion to get rid of the colonies was voiced, “the old patients refused,” Abd El-Naby says, “saying they didn’t want to go back.”
The Abu Zaabal colony was built in 1933 by the Ministry of Health over an area of 300 acres (1.2 square kilometers), encompassing a hospital, agricultural land and the adjoining village of Abdel Menem Riyad.
“It’s called a colony because they are the only ones living there,” says Dina Wadie, project assistant at Caritas Egypt. “No one strange comes in and no one leaves. It’s closed around them. All of their livelihoods — their work, their medicine, their marriages — are in it.” Caritas Egypt, part of an international organization founded in 1950 to relieve social problems, has been working with the Egyptian government to eradicate leprosy for over 50 years.
The agricultural land lies on a total area of 125 acres (0.5 square kilometers), and was initially intended to make the colony self-sustaining through the growing of produce. But over time, the government took possession of the land.
As a result, the colony was in dire straits before Dr. Karam Shakshak and Dr. Ahmed Al-Thokaby arrived in 2003. Nothing had changed or been renovated in over 70 years: the bakery had been demolished, while the water station was on its last legs, producing unfiltered water. The hospital was severely lacking in facilities, with doctors refusing to work, despite having sick patients waiting for treatment.
“The first thing we had to do was fix up everything because it was all in very bad shape,” says Al-Thokaby, who took over from Shakshak as director of the colony, or ‘leprosium,’ as he calls it, three years ago. “The water station was our first major problem. It brought us water for the hospital and irrigation and we all relied on it; the motor was dying and we had no water.”
While all funding is supposed to come from the Ministry of Health, donations have been the force behind the colony’s resurgence. The Sovereign Military Hospitaller Order of St. John of Jerusalem of Rhodes and Malta, known as the Order of Malta, bought a new LE 40,000 water station. A lay religious order of the Catholic Church, the Order of Malta dates from before the First Crusade in 1098, has 47 national associations worldwide and a total membership of 12,500. Its work involves caring for the sick and the poor.
This year, the order bought the colony a back-up electricity generator for LE 165,000 after the electricity was switched off during an operation, and new water pipes to replace the old ones, which had nearly rusted through, for LE 55,000. They also donated a new LE 180,000, 28-person bus, as well as covering the bills of outside doctors who come for specific operations.
Caritas Egypt is Abu Zabaal’s biggest donor after the Order of Malta and has also played a large role in the development of the colony. Last year they built two workshops for carpentry and plumbing, while also providing nuns who have been working at the hospital under contract with the Ministry of Health for 30 years.
“All this is because of God,” says Al-Thokaby. “Just like He created the disease, He created people to help deal with it. [There have been] a lot of nasty articles written and a campaign against the order in the newspapers, but personally all we see from them is good. They aren’t missionaries and they don’t speak about religion.”
Private donations also make up a part of the funding: A private donation last year allowed Al-Thokaby to construct a new room for ear, nose and throat operations, while the pharmacy is fully stocked and school uniforms have been purchased thanks to private funding. Other donors like the Italian embassy and American University in Cairo have provided equipment such as anesthetic and ultrasound machines.
Some of the recent major donations have come in the form of the re-installation of electric cables after they were stolen from the hospital, as well as the construction of a bakery. “Some people came and stole the cables from the hospital,” Al-Thobaky says, “and a Belgian [donor] installed new underground cables for LE 35,000 out of his own pocket.”
The hospital’s new bakery now churns out far more bread than the colony used to have: “The government used to give four loaves per patient per day — now, the hospital patients, the [Abdel Menem Riyad] people and the employees all get bread.”
Sabah Hussein Hajay, 53, has been living in the colony since her parents left her there at age seven. She has one deformed eye and disfigured hands, yet she says she has accepted her place in life. She is in charge of the keys to the hospital and informally runs the women’s dormitory.
“I saw the helwa and the mora [good and bad] here. A long time ago things were really, really bad. We lived in slums, there were no buildings, and no one would come to visit us,” she says. “Now things are really good and we’re living great. Too bad it came at the end of my life.”
The colony’s hospital is now a hospital in the truest sense of the word: surprisingly spic and span, with all the labs and operation rooms recently renovated and equipped, and a clinic operational every day. It includes an administrative building, three patient wards, a laboratory for medical analysis, a section for radioscopy, a pharmacy, an outpatient clinic, a clinic for ophthalmic care, a dispensary, an X-ray room, a physiotherapy room and a workshop for artificial limbs. Separate male and female dormitories have also been constructed to accommodate the 767 patients it had in 2007, with each room containing 10-30 beds. Leprosy treatment is free, and provided in tablet form, as prescribed by the WHO.
The hospital now boasts 55 nurses, five full-time doctors and part-time doctors in almost every specialty. It must be fully equipped to deal with all types of illness, Al-Thobaky says, because leprosy patients “suffer from diseases just like every one else: blood pressure, diabetes, kidney problems,” and regular hospitals refuse to admit them for everyday ailments.
“The leprosy patient has never had a place to be treated; everywhere he goes he faces amarenen [two bitter things] because people are scared of him,” Al-Thobaky says. “Last year, two patients got in an accident while going to visit their families and the Demerdash [hospital] refused to let them in because they were afraid of them.  So, a [donor] bought us bone equipment for LE 20,000 and we hired a bone specialist to carry out the operation.”
Aside from unforeseen costs like this one, one of the largest expenses the hospital incurs on a regular basis is for bandages. Leprosy victims have no feeling in their limbs and get cut easily. Last year the bill for gauze and bandages exceeded LE 15,000, a cost the Order of Malta footed.
To give some of the patients a chance to get out and about, a small number of jobs are available for those who are healthy enough to carry them out — including cleaning parts of the hospital, aiding nurses in minor surgical operations and working in the grounds’ gardens. Around 70 male patients, hired by the government, work in the colony’s gardens or in the agricultural land nearby for salaries of LE 5–7 a day.
“It’s a dead salary,” admits Al-Thokaby, “but the work is minimal and they get donations. What else can they do?  What can they do with no hands?”
Ahmed Mohamad Barmouny, 71, is one of these workers. He came to Abu Zaabal 52 years ago. “I live in [Abdel Menem Riyad] and I have to take the bus from there to the hospital to work in the garden because it’s one kilometer away and I don’t have a leg,” he says. “It used to be LE 0.25 and now it’s LE 0.75. Should I pay money to get bread for my 12 kids or come here?”
Although he complains about the bus fare, Barmouny praises the colony’s recent developments. “I’ve been here for half a century; we used to carry stones on our backs and now we live in a five-star paradise,” he gestures enthusiastically with his fingerless hands. “I’ve gone through 14 directors and this director is the best. They just performed a cataract operation on my eyes. They even inspect our children when they’re not sick!  Without [the colony] we would die like fish out of the water.”
Mohamad El-Sayed, 34, who began life in the colony four years ago when he went blind and lost feeling in his feet, agrees. “They don’t make us want anything and they can’t do anything more than they do,” he says. “We live here better than we did at home.”
The Tin Farm
Approximately 650 families live just outside the colony in the village of Abdel Menem Riyad, also known as Ezbet El-Safih (the ‘tin farm’) due to the character of some of its first houses, built with material scraps such as tin boxes, tree trunks and cardboard. At least 96 percent of the village’s first generation settlers were patients at Abu Zaabal who were married and required to leave the colony because of the separation between male and female patients.
“The people living there have been living with the disease for a long time,” says Al-Thokaby. “After a time with the disease, they begin getting used to it and they want to live and get married and have kids.” Children born of leprosy victims are healthy, as the disease is not hereditary. As a result, only approximately 400 of the 3,000 people living in the village are suffering from leprosy.
Today, houses are composed of one or two small rooms, with water available through pumps. Although living conditions are much better, and some houses even have TVs and radios, they aren’t exactly sturdy.
Abd El-Rasool El-Sayeed, 65, who has severely bloodshot eyes and disfigured hands, lives in the village with his wife and four kids. He says his house fell down on top of them.
“No one is rebuilding it. I’m asking people to fix my house and help us,” he says.
Many of the village residents remain dependent on the colony as they are severely disfigured and cannot work. Most of the ex-patients are still registered at the hospital, and receive necessary medications, food and financial support from it.
In 1982, Caritas Egypt founded a socio-medical center in Abdel Menem Riyad to receive and treat elderly patients and their families. They also provide women with courses in sewing and tailoring, providing them with a certificate approved by the Ministry of Social Solidarity at the end of the course. In addition, Caritas has established a pre-school which hosts 150 children aged three to six, offering literacy courses to 38 young girls, support for primary school children and funding for transportation for the town’s 40 university students.
The main thing missing now, says Al-Thokaby, is a primary school. Many of the children take a truck to the nearest school, located eight kilometers away. “The land is there,” he says “but we need an investor to give LE 950,000 to the government to build the school, who will then pay back the money in installments over 15 years.”
Funding is also needed to install a proper sewage system, build houses and feed and clothe the children, as these services fall outside of Abu Zaabal’s mandate. “We are living in a tent with blankets in the street,” El-Sayeed says: “winter and summer.”
Although there has been no shortage of donors willing to buy equipment or donate money, and patients are now living in adequate conditions, something still lacks at Abu Zabaal: visitors. Although the physical pain and deformity caused by leprosy is a heavy burden for victims, the social and mental toll the disease takes may in fact be more difficult.
According to Dr. Noha El-Sabe, a psychiatrist at Ain Shams University who has dealt with patients suffering from infectious diseases including HIV, leprosy victims suffer from five main problems.
“The biggest problem is that leprosy is a chronic disease, which is progressive and sometimes non-regressive, [in the sense that] recovery is incomplete,” she says. “Chronic patients may develop psychiatric problems related to the intensity of the injury, [such] as depression, aggression, anti-social behavior  Leprosy also causes deformity, which is visible to everyone so it scares people and it makes [the patients] physically disabled.There’s also the stigma surrounding the disease. Lastly, the patients are isolated in institutions, withdrawn from and unable to deal with society.”
Al-Thokaby knows first-hand the impact of leprosy on its victims. “The social implications are more difficult than the disease’s physical implications,” he says. “A leprosy patient gets onto a microbus and everyone gets off. He is destroyed psychologically.” Even doctors, who should know better, don’t admit leprosy patients into their hospitals. At Abu Zaabal, only five doctors are on staff because it has been difficult to find more.
In addition to the social stigma, some Muslims believe that Islam orders followers to avoid leprosy victims, with many ahadith (prophetic sayings) appearing to corroborate that idea. One popular hadith instructs believers to “flee from the leper as you would flee from a lion,” although interpretations have said the term ‘leper’ actually refers to someone who is mad, and may cause harm. On the other hand, there are many stories referring to the companions of Prophet Muhammad (PBUH) eating with leprosy victims, and others describing them as being treated humanely.
While the general consensus among Islamic scholars is that leprosy victims are not to be shunned, many sufferers were left at Abu Zaabal after having been detained by police, or even by their own families. It is no wonder then that many patients prefer a life of isolation at the colony rather than attempting to integrate into a society that for the most part rejects them.
“The patient has to deal with a society that sees his deformity and rejects him. But the outcome depends on the traits of the person,” says El-Sabe. “Some are introverts and become socially withdrawn and avoid everyone. Others [will cope better] by seeking to deal with their illness directly.”
Regardless of the sufferer’s personality, however, El-Sabe believes that seclusion is never a good idea.
Not only do leprosy patients live in self-imposed prisons, their physical deformities can also wreak havoc on their self-worth. Some cannot walk, others cannot see and many cannot work or contribute to society.
“They need cognitive behavior therapy to change their belief about the illness: that he isn’t going to work, that he won’t be productive, etc, to change the way he thinks,” says El-Sabe. “And supportive psychotherapy, [to] give him self-assurance and self-esteem.”
Despite social stigmas, progress is being made. The colony is currently in good shape, and its hospital is gaining popularity for its free treatment. Leprosy victims from all over Egypt are making their way to Abu Zaabal, which now houses over 800 patients.
According to Wadie of Caritas, the ultimate goal for leprosy patients in Egypt is an ambitious one. “We want them to live like people who have [something like] diabetes or high blood pressure. [In this way] public perception can be influenced.”
“You can’t imagine how happy a leprosy victim is when you shake his hand,” adds Al-Thokaby. “It’s like you are telling him that he is still a human; that he is worth something.” et