Forgotten diseases
Leprosy in Lebanon


 
Ever since Ahmad, 27, was diagnosed with leprosy three years ago, he has had to face the physical consequences of his condition, as well as the social stigma associated with a disease most think vanished from Lebanon long ago.

“People are very scared and ignorant,” he said. “If they know you have leprosy, no one will approach you or talk to you. You simply become a pariah.” After being diagnosed with the illness, the young bus driver initially refused to tell anyone.

“Only my parents and my brothers knew,” Ahmad said. In an indication of his shame, Ahmad has yet to tell his wife, to whom he has been married for more than a year, about his condition. According to Zuheir Chebaklo, a dermatologist and director of the National Programme to Fight Leprosy (NPFL), set up in 1995, even doctors are often loath to treat sufferers of the disease. “It’s still a taboo, even in the medical sphere,” he said. “It’s sometimes hard to find hospitals willing to accept lepers,” he added, despite the fact that “leprosy is up to 99.5% curable nowadays.”

Salma Obeid, a housewife, blames religious books for the disgrace associated with the rare malady. “The stigmatisation is due to the fact that, for generations, books used to teach religion at schools described leprosy as a malediction. “In the popular imagination, it’s a curse. It means the person has sinned,” she said. Yet contrary to common perceptions, leprosy is not highly infectious, although it can be contracted by close and frequent contact with untreated cases, according to the World Health Organisation (WHO).

Caused by a mycobacterium known as leprae, symptoms of the malady include the appearance of patches on the skin of discoloration and numbness. If the illness goes untreated, it can result in permanent damage to the skin, nerves, limbs and eyes. While the WHO provides a multi-drug therapy cure for leprosy free of charge, “many patients are poor, and live far from the capital,” said Chebaklo. “We can’t always afford to supervise them.” What’s more, the stigma associated with the disease means many sufferers do not seek treatment.

“They refuse to accept their situation, or stop taking the drugs as soon as they feel better,” said Rabah al-Hafez, a family doctor in the northern city of Tripoli. As is the case with many other health issues in the developing world, workers devoted to the eradication of the disease complain of a serious lack of available data. “Inadequate knowledge and awareness, accompanied by stigmatisation of the disease and the absence of a national action plan to fight it, has left us with underreported cases,” Antoine Farjallah, director of the Committee for the Elimination of Leprosy and Forgotten Diseases in Lebanon (CELL), said. CELL has so far documented 78 leprosy cases, with one or two additional cases cropping up every year, usually among relatives of those already suffering from the disease.

With an estimated population of 4.5 million in Lebanon, experts fear that cases of leprosy could be higher than those reported. In 1997, the Public Health Ministry began an 18- month-survey of leprosy sufferers, focussing on the northern region of the country, but experts would not release them. However, no similar survey has ever been undertaken in southern Lebanon due to lack of funds and the Israeli occupation. Edouard Makhoul, a dermatologist at the Hotel Dieu Hospital in Beirut, where most cases are treated, said that medical files, including case histories and prevalence rates, were destroyed in the ruinous civil war that wracked Lebanon from 1975 to 1990. Meanwhile, CELL is lobbying for lepers’ rights and their reintegration into their respective communities.

A recently launched 12- month project includes regular visits to patients, a concentrated effort aimed at educating community and health staff about the disease and meetings with public officials to discuss the issue. Remarkably, many officials are not even aware of the existence of the disease. “If I had not met with CELL representatives, I wouldn’t have known we still had leprosy in Lebanon,” said Atef Majdalani, president of a parliamentary commission for public health. He added: “It’s dangerous, and we can’t keep such an issue hidden.”

In the early 1970s, the Lebanese and Syrian health ministries agreed to send the worst cases from Lebanon to the al-Walid Hospital in Douma, Syria, some 30 km from the Syrian capital, Damascus. Given the lack of awareness, however, little state funding is earmarked for treatment, and Lebanese patients at al-Walid receive only the equivalent of US $40, paid by the Syrian government. “Since the budget hasn’t been passed yet, the staff hasn’t been paid for the past year,” said Nabil Salam of the Lebanese Ministry of Public Health.

Despite the meagre living conditions, however, Hamido, who has been living at the al-Walid leprosarium for 30 years, refuses to go back to Lebanon even though he has been cured. “At least, here, no one looks at us as handicapped,” he said.

                                  
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