Hektoen International

A Journal of Medical Humanities

A trip to the leprosarium: Forgotten people and their hope for treatment

Robert Schenck

Henrietta’s hands

Henrietta in the center surrounded by friends.

Thirteen Congolese patients had gathered under the shade of an acacia tree to wait their turn to come forward and be examined. It was a typical clinic day, and a young woman, perhaps in her early 30’s, sat amongst the older people, her chin supported nonchalantly by her right hand, her elbow perched on her knee. Henrietta Mbumbu’s attitude seemed to convey that she was bored and possibly puzzled as to why she was in the Tshimuanza Leprosarium with twelve other people, all much older than herself. I wondered about her situation: Does she have a husband and children? I hoped to discover more about her personally during the surgical treatment I anticipated providing her at IMCK (Institut Médical Chrétien du Kasai). This is a 150 bed teaching hospital partially supported by the Presbyterian Church USA, and is known as one of the finer hospitals in the Congo. It is in a village close to Kananga, the provincial capital of West Kasai Province, and the nearest hospital to the Tshimuanza Leprosarium, which is run by the Catholic Sisters of Charity sixty miles away. No government aid is given to either institution.
Posing for a clinic photo, Henrietta impassively stared straight at the camera. As she came forward to sit in a chair opposite me, it was clear that leprosy had badly deformed her hands. Some fingers were shortened, the muscles at the “ball of the thumbs” were flattened, and she could not oppose the thumbs to the tips of her other fingers. In addition to early clawing deformity of her fingers, she had an ulcer on her left palm, caused not by bacteria, but use of a machete grasped by her unfeeling hand. Once the ulcer heals, the surgical priority for her was to restore opposition ability of her thumbs.

Henrietta’s situation is not unusual, but it is also not the hopeless situation that many of us imagine. By taking a combination of drugs, patients can now be free of the bacillus, Mycobacterium leprae, in one to two years of treatment. Yet in many patients, nerve damage and deformities, like those of Henrietta’s hand, have already occurred. But even these patients are not without hope.

Henrietta’s hands.

The “claw hand” deformities seen in leprosy can involve all five fingers, and are easily understandable to hand surgeons, for it is the little muscles within or intrinsic to the hand that are affected by the ulnar nerve involvement at the elbow, (your “crazy bone” area), and the median nerve at the wrist level, both seen in leprosy. And because the long muscles and tendons from the forearm still move strongly, without the balancing forces of the little muscles found in the hands, the fingers “claw” or go into flexion at their last two joints. For patients who suffer from these deformities, reconstructive surgery, with transfers of tendons of working forearm muscles, can restore balance to the fingers so they are again functional.

However without surgeons trained to perform these surgeries, Congolese people like Henrietta must simply live with their deformities. I came to the Congo to not only assist in treating these patients, but also to teach Dr. Blaise, a brilliant Congolese doctor here, how to do the procedures, so he may continue to do these operations after I left. As misconceptions about leprosy are dissipated, I hope that more assistance can be provided to people like Henrietta and others afflicted by leprosy in countries where the disease is still endemic. The following facts and fallacies about leprosy should shed some light on this extremely treatable disease.

Leprosy — Facts and fallacies

LEPROSY … the word conjures all kinds of unpleasant images. We can see in our imagination the leonine facies and the deformed hands and feet. In medieval days the victims were commanded to sit outside the walls and gates of their towns, and to shout “Unclean! Unclean!” to warn people passing by, all the while hoping for a small coin to be dropped into their cup. The cause was then unknown, but because of the facial and hand deformities, avoiding contact was the universal reaction.

FACT: The cause of leprosy is known

The bacillus causing the disease, Mycobacterium leprae, was actually the first bacterium to be seen under a microscope and the first bacteria to be identified as causative agent of a human disease. Norwegian pathologist Armauer Hansen in 1873 made the connection. The bacteria’s waxy coat stained bright red, similar to the next discovered bacillus, the one that causes tuberculosis.

FALLACY: Leprosy patients should be segregated into institutions
In past centuries, missions and “enlightened” governments established leprosaria where the patients could be isolated, often for the remainder of their lives. But now in the US and in a number of countries, leprosaria have been closed and the patients treated as outpatients.

FACT: Leprosy does not kill people
Despite millions of bacteria present in the patient’s skin and nerves, leprosy never directly kills a person. The bacillus has a predilection for nerves near the surface of the skin, for the germ thrives at lower temperatures near the skin surface. As a result of the bacterial infection, the body’s defense mechanisms produce inflammation in the nerves—and the resulting loss of sensation and hand muscle function cause havoc.

FALLACY: Fingers and toes just “drop off” It takes many years for the insensitivity, ulcers and deep infection to occur before the fingers or toes shorten. Even then, portions of the finger nails can be found back on the hand stumps. With treatment and prevention, even this slow finger absorption can be avoided.

FACT: Leprosy patients often suffer burns
Without feeling in the fingers, people with leprosy easily suffer burns. Remember how strange your lip feels after the dentist gives you an anesthetic, and how easily you could bite your lip and not feel it? The same thing happens in the fingers, and people with leprosy are prone to burn their fingertips on hot cooking utensils, burning sticks, or hot stones, and NEVER FEEL IT! Then as the burned areas develop infection, the bones are absorbed, and in some cases the
fingers almost totally disappear. If people are educated in how to avoid directly touching hot objects, the infected ulcer and finger absorption can be avoided.

FALLACY: Leprosy is very easy to catch
On the contrary, up to 90% of adults have a natural immunity. It is thought that nasal secretion droplets and / or skin to skin contact are ways leprosy is spread. Household contact is a factor, but only one out of ten patients transmits it to their married partner. Furthermore, babies are not born with leprosy, and two thirds of babies born to leprous mothers will never get the disease, even if the mother keeps the child with her.

FACT: Leprosy is increasing in numbers
Contrary to common reports, leprosy has NOT been eradicated. Recently, the UN reported 300,000 newly diagnosed cases. And in Congo, as in India, numbers of new cases are actually increasing.

FALLACY: Leprosy is hopeless
Again, just the opposite is true. Just a few days of treatment can stop patients infecting anyone else, and with reconstructive surgery and rehabilitation, most patients can be returned to their families and communities to lead productive lives. SURGERY PROVIDES HOPE!

DR. ROBERT R. SCHENCK and his wife, Marcia Whitney-Schenck, volunteered their services in Africa for nine months, three months each in Cameroon, Democratic Republic of the Congo, and Uganda. Dr. Schenck recently retired after 36 years as the Director of the Section of Hand Surgery, Department of Plastic Surgery at Rush University. Dr. Schenck is teaching hand surgery to African surgeons.

Highlighted in Frontispiece Volume 1, Issue 4 – Summer 2009

Summer 2009



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