Noma: The face of poverty.

February 27, 2009

At about the age of seven Gadam was struck by Noma, a cruel disease that destroys the face and mouth. 90% of untreated children die of the disease. Gadam lived but was so shamed by his disfigurement that he never returned to school and has shrouded his face ever since.

Mahaxai Village, Khammouan Province, Lao Peoples Democratic Republic

The village of Mahaxai in Khoumuan Province sits in south-central Laos, about forty miles west of the border with Vietnam.  During the Indochina War this village the site of violent clashes between infantry of the Royal Lao army and Vietnamese troops fighting on behalf of the indigenous Pathet Lao.  The villagers’ precarious position, essentially life in crossfire, was made all the more harrowing by incessant aerial bombardment from American planes.

Today, Mahaxai is the sort of place that keeps clearance teams busy.  In 2008 we spent months clearing half a minefield that had plagued the village for thirty years. (The other half?  Sadly for the locals, the major international corporation that hired us to clear that field needed only half the killing area cleared to achieve their commercial objective.  That accomplished, no one else, neither humanitarian nor commercial, has shown an interest in finishing the job.)

We’ve also cleared a fair number of mortars, rockets, artillery shells and cluster bomblets.  And, there were some big bombs as well.  We’ve found bombs up to 750 pounds in size, clear evidence that death once rained down on tiny Mahaxai from American B52’s flying 25,000 feet overhead.

During the war, living conditions for villagers in and around Mahaxai must have been grim.  A couple of guys who work for us grew up in the area and have shared tales of abandoning their homes and living in caves or hand-dug bunkers.  They describe years of terror in which they feared to venture a greater distance from their family’s bomb shelter than they could cover at a run should they hear planes overhead. Even the younger guys born after the war remember unremitting hunger and constant struggle to obtain basic necessities. While the fear of being shot, shelled or bombed ended in 1975, the poverty engendered by the war still has not been conquered to this day.

My interest in the conditions that the Mahaxai villagers experienced both during and after the war is based on the fact that I recently befriended two men from that village who are survivors of Noma, a rare disease that, in Laos, may have its origins in living conditions created by the war.  Since Mahaxai was an environment in which multiple cases of Noma had occurred, I wanted to find out more about conditions in that village during and immediately after the war.  I also wanted to appraise the current situation and determine whether, after all these years, life in the village still put children at risk.

Noma, in the past called “cancrum oris,” is an ulcerative condition of the mouth sometimes described as “oro-facial gangrene”.  It usually affects young children and results in destruction of the mouth and face. A Lao development worker created an apt, expressive Lao name for the condition: “Pagnad Pak Poue”, or “disease of mouth rotting”.  Among untreated children the disease has a mortality rate of over 90%.  The minority who live may lose teeth, lips, cheeks, nose and jaw.

Noma has been called “the face of poverty” because its presence is clearly associated with poverty, malnutrition, infections, impaired immunity, life in close contact with domestic animals, vitamin deficiencies, poor sanitation, poor oral health and limited access to health care.

The disease is most commonly found in sub Saharan Africa and the largest specialized treatment center in the world is located in Nigeria.  Noma has not commonly been cited in Asia.  It was through the efforts of my friend Dr. Leila Srour, a physician working under the auspices of the Minnesota-based charity, Health Frontiers, that documentation of Noma in Laos reached a professional journal.  (See: Noma in Laos: Stigma of Severe Poverty in Rural Asia, The American Journal of Tropical Medicine and Hygiene, April 2008, Dr. Leila Srour, et al.).  It was Leila who first aimed me in the direction of Mahaxai.

The first victim I sought out was a man named Gadam.  Once I resolved to investigate his rumored existence, he wasn’t hard to find.  Starting miles and miles from Mahaxai all I had to do was ask villagers where I could find the man with a hole in his face.  Everyone I asked was able to point me in the general direction of his home.

When I finally caught up with him, Gadam was just arriving home from a day’s work in his rice field.  His face was partly shrouded by a scarf that he tied around his head, concealing his chin and both cheeks.  He was shy in my presence, but my interpreter, Yai, is skilled at breaking down inhibitions and establishing rapport with villagers.  I let Yai chat and joke for a while before I had him explain that I had heard of Gadam and his medical condition and wanted to learn more about his life.

Gadam welcomed us into his home and as we paused to remove our boots, a young woman in the household briskly swept the floor of the veranda clean with a straw broom and then unrolled a boldly colored mat to cover the floor.  Yai and I made ourselves comfortable, sitting cross-legged on the floor, and Gadam immediately dropped down across from us.  Shortly, the young woman reappeared carrying two glasses and a pitcher of cloudy well water.  She gracefully slid to the floor at Gadam’s side.

“Ah”, I thought.  “Not a sister but his wife.”

From my position, looking front on, Gadam’s face and mouth looked almost normal; the scarf successfully hid his disfigurement. I wondered whether he kept the scarf in place within the privacy of his home, hiding his wounds from his wife and other family members.  And, I asked myself, “Here, within the close confines of village life, does he hide his face in shame or to spare others discomfort?”

After a few minutes of small talk about current farming conditions, the weather, and the health of Gadam’s family, we broached the subject of the disease that had wounded his face and altered his life. Gadam was soft spoken and shy, but willing to share what he could remember about the course of the disease.

Later, as I learned more about Noma, I realized that Gadam’s muffled voice was not just a factor of his shyness but was, in fact, another consequence of the disease.  Noma victims often experience such extensive damage to the bone structure of the jaw as well as the other tissues of the mouth that they are left unable to move their jaw to eat or speak.  (In Gadam’s case, he was able, with effort, to open his mouth the width of his index finger.)

Gadam said he was 27 or 28 years old.  He was struck with Noma when he was perhaps seven years old.  He remembers that it was shortly after he started school.  His first symptom, common to most Noma patients, was a small ulcerous sore in his mouth that quickly became black in color, and left a very unpleasant taste.

The sore expanded rapidly and did not respond to any of the home remedies that his mother attempted.  Being poor, medical care in the provincial hospital, about 30 miles away, was out of the question.  Gadam isn’t certain how long he was ill but he knows that his mother feared for his life.  He grew feverish, fell into a delirium and subsequently lost consciousness for several days.  Before the infection abated he lost teeth, jawbone and soft tissue inside his mouth.  He was left with quarter-sized holes in both cheeks.

When Gadam, more or less, recovered from the active stage of the illness, he believed himself to be so disfigured that he couldn’t bear the thought of facing his classmates; he never returned to school.  From that time on he shrouded his face.

It’s difficult to accurately estimate the number of victims that Noma claims. It’s common for disfigured victims to hide, or be hidden from the public. Governments sometimes deny the existence of Noma because its presence stigmatizes aid and development efforts. As a consequence of this individual and collective shame, most victims live isolated lives: lonely, sad, and depressed.

Like asking a fish to describe water, Gadam had difficulty appraising whether, during his childhood, his family was more or less poor than other families in Mahaxai.  “We were like everyone else”, he said.

I probed a bit to get a clearer picture of living conditions in Mahaxai during his boyhood, ten years after the war.  My questions about food and hygiene left Gadam puzzled.  He had no way of knowing whether his family had more or less food than their neighbors; whether their water was cleaner or more foul than others.  To Gadam, life in Mahaxai was just life in Mahaxai.  It was what it was.  However, one of my questions did result in a reveling answer: Gadam’s mother gave birth to six children; three died in early childhood and she very nearly lost him.

(To this day, or at least to 2007, the latest date for which I have trustworthy figures, 41 % of Lao children are stunted by malnutrition, infant mortality in many regions is well into double digits and average life expectancy is about 20 years less than most Americans enjoy.)

In my opinion, Gadam’s one lucky break in life was that an older sister married well.  His brother-in-law is not wealthy but, by virtue of owning a petrol station, he was able to lift his wife and her family out of abject poverty.  He even came up with money to take Gadam to Thailand to investigate possible medical treatments.  Sadly, the trip to a Thai hospital occurred when Gadam was about twelve years old, at least four years after the disease ran its course. The Thai doctors diagnosed Gadam’s illness but could offer no treatment that the family could afford.  Reconstructive surgery was completely beyond even the brother-in-law’s resources.

Gadam grew to manhood without the benefit of an education but with enough physical strength to work productively in the family rice fields.  A few years ago Gadam’s brother-in-law offered him part-time employment pumping fuel in his petrol station, located on a well-traveled road running past the village of New Mahaxai.  The station job forced Gadam into the larger world beyond his village and required him to meet and talk with strangers, but he stuck to his resolve to not uncover his face in public.

Within the intimacy of village life, Gadam developed a friendship with a young woman who knew him from childhood and saw past his disfigured body to the person within.  A romance began and marriage followed. During one of my visits I asked them whether they planned to have children, and stifled a chuckle when Gadam told me, “We are trying but nothing has happened yet.”

In the years since I first met Gadam I have frequently stopped at the family petrol station to chat with him, or driven into his village to visit him and his wife in their home.  On one visit I learned that his wife was pregnant, on another that she had given birth to a healthy baby boy.  Eventually I was able to bounce the toddler in my lap as his parents looked on.  Gadam’s damaged facial muscles prevented him from offering a conventional smile, but on that day there was pride and happiness in his eyes.

In Part 2 of this article, to follow soon, Gadam is offered surgery to repair his face…

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