A pioneering project to cure children crippled by fluoride poisoning holds hope for tens of millions of people
For years the people of Tapatjuri, a remote village in northeast India, thought evil spirits were tormenting them. It was the only way they could explain why hundreds of people in their community were crippled, with bones bent so badly out of shape that many could not wash, eat, or leave their houses without help.
The disease struck all three of Taramiya Uddin’s children, starting in the late 1990s when his eldest son was a small boy. One day a roaming witchdoctor known as a kabiraj arrived offering to cure his son.
The kabiraj chanted an incantation into a bottle of mustard oil and told Taramiya to rub it on his son’s legs, which splayed outwards from the knees, making walking painful. The cure didn’t work, but witchdoctors continued to arrive in the village with their elixirs, charging desperate parents more than a thousand rupees, roughly £10 – several times the average daily income of £1.35.
A major public health problem
The problem was the water, contaminated with naturally occurring fluoride. Most people in the village in Assam state, like millions across India, had been drinking from pumps that drew water from deep below ground, where it had absorbed dangerous levels of the chemical from fluoride-bearing rocks.
Skeletal fluorosis is a major public health problem in at least 25 countries, but India and China are believed to be the worst-affected, with tens of millions suffering from either bent bones, or less severe dental and non-skeletal fluorosis. In the UK the chemical is associated with healthy teeth, and is even added to drinking water by some local councils. But when it accumulates in the body at excessive levels it begins to mottle teeth and calcify joints.
The World Health Organisation recommends an upper limit of 1.5 parts per million of fluoride in drinking water. In Tapatjuri, people have been drinking from wells containing up to 15 parts per million.
Now Tapatjuri and two nearby villages are the site of a pioneering project to reverse the disfiguring effects of fluorosis in children. A team led by Dr AB Paul, former chief engineer at the state’s public health and engineering department, is treating 20 patients between the ages of four and 13 using simple nutrition tablets and fresh water.
The treatment, which includes calcium and vitamins C and D, can alleviate symptoms in adults, but the project targets children because its supporters believe the fact that their bones are still growing makes it is possible to cure them entirely.
Taramiya’s eldest son, who was “treated” by the witchdoctor, is now 18 and has permanently misshapen bones, but his eight-year-old brother Farhan appears almost completely cured. In 2012 his knees knocked together and he couldn’t walk to school on his own. Now his legs are straight, and he can run and climb trees, though his father says his muscles are still weak. He has improved more than the 20 children on the new programme because he has been receiving treatment for longer. His parents began following Dr Paul’s advice more than two years ago.
Dr Paul and his team have been working in the village since 1999 to tackle superstition and encourage families to change their diets and drink safe water. They have also convinced authorities to supply the village tract with fluorosis-free water, and the contaminated wells around Tapatjuri are now marked with red crosses.
Taramiya laughs, perhaps a little embarrassed, when he recalls handing his money over for magical cures. “Yes, I believed in it” he says. “Overall I spent 25,000 rupees [about £250] on the kabiraj. He is a fraud.”
There is strong evidence the treatment offered by Dr Paul’s team works, but most doctors in India are not trained to deal with the disease, said Andezhath Susheela, executive director of the Delhi-based Fluorosis Research and Rural Development Foundation. “The majority of paediatricians do not understand fluorosis and children do not get appropriate medical assistance,” she said.
‘No one tested the water’
While fluoride-contaminated water occurs naturally, human error is behind many cases worldwide today. During the 1980s the UN led a global campaign to dig wells in developing countries.
The campaign helped to drastically reduce cases of diseases like dysentery, which is caused by bacteria in surface water. However, neither governments nor the UN agencies involved made sure that the water below ground was free from chemical contaminants, said Chris Neurath, research director at the American Environmental Health Studies Project , an awareness group that focuses on the effects of fluoride.
Making officials acknowledge the problem has been a painfully slow process. Dr Paul faced a “long struggle” after first recognising the disease in Tapatjuri in the late 1990s. “I had to argue with the health department to make them believe it was fluorosis,” he said. Many medical professionals, unimpressed at being lectured to by an engineer, insisted the villagers were suffering from diseases with similar symptoms, such as polio or rickets.
In 2002, the public health and engineering department installed shallow ring wells in the area, which avoided the deeper fluoride-bearing water deposits. At least that was the plan, but both the public health department and Unicef, which provided logistical and financial support, appear in this case to have failed to learn from the mistakes of the 1980s: no one tested the water, said Basanta Salawi, who has worked for the department since 1990.
When the water was finally tested in 2012, four of the dozen wells that were sunk were found to contain between three and five milligrams of fluoride per litre, far above the maximum level of one milligram recommended by the Bureau of Indian Standards.
Officials at Unicef, which was part of the push to dig wells during the UN’s international water decade of the 1980s, have previously admitted that a focus on installing large numbers of pumps meant quality was overlooked. It has since led de-fluoridation programmes and other water safety efforts across India.
Caroline den Dulk, the agency’s spokesperson in Delhi, said it would be “extremely difficult” to trace records for Tapatjuri from 2002, when Unicef did not have an office in Assam state. She added that Unicef works with governments to ensure quality issues are addressed before projects are commissioned.
“Once the project is completed, it is officially handed over to the concerned community members and the quality assurance of the water source is the responsibility of the government,” she said.
Despite the hiccup with the ring wells, efforts to provide safe drinking water in Tapatjuri have no doubt improved the lives of the residents. Water shortages, however, are an everyday problem.
Halima Begum, the mother of three children affected by fluorosis contamination, shouts at Salawi as he approachs their house on his rounds. He is in charge of rationing water between several villages, making him unpopular with some residents.
Halima’s frustration is understandable. Her three sons have been disabled by contaminated water, and she and her husband suffer from non-skeletal fluorosis, a painful condition that makes their joints and bones ache.
While the number of children in the Tapatjuri programme is small compared to the hundreds suffering in the region, Dr Paul hopes it can be a model for other communities. Curing the disease should also help banish the harmful superstitions that have grown around it. “That’s our aim,” said Dr Paul. “Establish a success story, and show it to the people.”
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