‘People Would Rather Lose Their Feet Than Their Pride’ : Doctors in Africa Wage Frustrating Battle Against Horrors of Leprosy

There are 96 beds in the leprosy hospital on the edge of town. As usual, they are all full. On Tuesdays and Saturdays at 8 a.m., Dr. Victor Smith orders bandages unwrapped and casts removed from his patients so he can decide who is well enough to give his or her bed to somebody else.

Tigabu Alamineh, a laborer in his early 20s, could have gone home if he had been willing to wear the strange-looking, thick-soled shoes that protect feet numbed by leprosy.

“Did you wear the shoes we gave you?” asked Smith, a Scottish orthopedic surgeon.

“I wore them every day,” Tigabu said.

The veracity of Tigabu’s statement was contradicted by his shoes and the missing big toe on his right foot. The 3-month-old shoes were under his bed, looking new. The toe had been amputated.

Tigabu, in fact, had been wearing canvas shoes so he would not appear on the street to have leprosy. The canvas chafed his numb toe. It became infected and ulcerated and had to be removed.

“Walking downtown with the special shoes is like wearing a flag that says, ‘I’m a leper,’ ” grumbled the doctor as he continued his rounds. “People would rather lose their feet than their pride.”

Most Stigmatizing

The World Health Organization says bluntly that leprosy “remains the most stigmatizing of all diseases.”

“It can be said that no other disease arouses such adverse reaction in the community and causes so much distress and unhappiness to patients and their families,” the World Health Organization reported.

Leprosy is more common in Africa than anywhere else in the world. Many epidemiologists think the continent was the original source of the disease. The World Health Organization says the prevalence rate of leprosy in tropical Africa, at nearly 4.6 cases per 1,000 persons, is more than twice that of Southeast Asia, the second most affected region in the world. In northern Europe and the United States, the organization says, the disease has all but disappeared among the native-born population.

Like most African capitals, Addis Ababa is a magnet for country people who have leprosy. They come to the city by bus, on horseback, often on bare feet mutilated by hundreds of miles of walking. They come here for medical care, to beg, to live among others who share their disease and the shame it often causes.

But the visible victims of the disease, those who beg in African marketplaces and outside churches and mosques, represent a small and rather unrepresentative fraction of Africans infected by Mycobacterium leprae, the shadowy bacillus that causes leprosy.

‘Point of No Return’

According to Dr. Martin Bosman of the Kenyan national leprosy control program, these people are “past the point of no return.” He says they survive as beggars by public display of how badly they are deformed.

Far more representative, he said, are Africans who have either no or only a slight deformity from leprosy and who take medication that controls the disease.

“Nearly everyone in Africa (where there are about 4 million people in treatment for leprosy) is treated as an outpatient,” he said. “Nobody likes to keep them in camps anymore.”

Here in Ethiopia, however, leprosy drugs often do not reach the people who need them. Besides being among the poorest countries in the world, with a per capita income of $120 a year, Ethiopia also has one of the most geographically isolated populations. Millions of people live in tiny clusters here on the spines of mountains. Roads are often non-existent, and the country’s limited health-care facilities often do not exist in the northern Highlands of Welo and Gojam.

Most of the 96 beds of the hospital here at the All Africa Leprosy Rehabilitation and Training Center are filled with patients from the Highlands, people who found their way to medical care after leprosy had numbed their feet and clawed their hands.

Ghastly, Numbing Wounds

A surgical ward in a leprosy hospital is an oddly peaceful place. Although many of the patients have ghastly wounds, most of them caused by walking too much without proper shoes or working without proper gloves, they have no pain. All the infected, suppurating appendages are numb.

On the recent Tuesday morning that Smith made his rounds, patients bared their wounds while chatting amiably with the medical staff and with each other.

“Leprosy is the strangest disease,” said Smith, a specialist in reconstructive surgery. “It is not really very infectious, it doesn’t cause pain and it doesn’t kill. There is just this great antipathy toward people who have it.”

Epidemiologists are not sure how the leprosy bacillus is transmitted, although the best current guess is through the respiratory tract. Researchers have found that only about 10% of the world’s population is susceptible to catching the disease. Genetic factors “greatly influence” the likelihood of one contracting leprosy, according to the World Health Organization.

Overcrowding Contributes

Although the reasons are unclear, overcrowding, poor hygiene and poor nutrition appear to be related to the prevalence of leprosy. Researchers have found that as countries develop, their citizens are less likely to contract leprosy, even if they are exposed to the bacillus.

The first symptom of the slow-moving disease is pigmentation of the skin. That is followed sometime later by destruction of nerves that affect sensation in the feet and hands. Contrary to popular conception and the opinions of many leprosy victims, the disease does not cause ulcers or make fingers and toes fall off. Rather, it progressively numbs them, allowing victims of the disease to mistreat and destroy their limbs without pain.

The progress of leprosy can be checked with the use of widely available drugs, which also are believed to keep victims from being contagious. Up to a point, cortical steroids can reverse nerve damage and restore sensation. After that, corrective surgery can, by transferring healthy tendons and muscle tissue, restore movement to clawed hands.

Gasheneh Hasem, a 38-year-old tailor, boarded a bus 17 years ago bound for this hospital. He grew up in the highland region of Gojam, the Ethiopian region with the highest prevalence of leprosy, and had the disease nearly all his life. He recalls that in Gojam he often took off for months to pick coffee in the hills and ignored his medicine.

Permanently Crippled in ’68

When he showed up here at the hospital for the first time, his left hand was clawed, his toes were worn short and he had a deep crack in his right heel. Although drugs arrested the progress of his disability, he was permanently crippled upon arrival in 1968.

After his first stay in the hospital, Gasheneh rented a $1-a-month hut in the squatter’s village beside the leprosy hospital. He divorced his first wife, a non-leper who stayed in Gojam, and married a woman from the village who had leprosy. He says he feels more comfortable living among people who have the disease.

The tailor has made his living since 1968 with the pedal-driven sewing machine he brought with him from Gojam. Long days at the sewing machine, however, have worn away part of his numb right foot.

He came back to the hospital early this month for surgery to remove dead bone from the foot and for treatment of infection.

From one of the beds in the leprosy hospital, Gasheneh said he was back in the hospital again only for temporary repairs. He said when his foot heals in six or eight weeks he will return to his sewing machine, perhaps wearing the thick-soled shoes that nobody likes.

In any case, Gasheneh said he has no intention of joining the lepers from his village who line up every morning to ride the No. 7 bus downtown to beg.