Bizarre ‘nodding disease’ striking children in East Africa
By David Lindsay
Pader District, Uganda
June 8, 2011
A mysterious disease that doesn’t even have an official name is killing and disabling children in isolated villages in northern Uganda. It also has some of the best minds in disease control completely baffled.
The condition is known loosely as ‘nodding disease’ because the stricken children ‘nod off’ as if they’re falling asleep. Many of them collapse and injure themselves. Some fall into cooking fires or drown. Others experience seizures, stunted growth, mental retardation and even malnutrition because eating seems to spark the fits.
Parents of the children are desperate. Many of the youngsters are unable to go to school or work to help support the family.
One mother we met has resorted to tying her 15 year old son, David, to a post outside the family’s small hut. She says this keeps him from wandering off and hurting himself or others. He spends most of his time sitting on the hot dusty ground, angry and confused, while villagers pass by at a safe distance.
Teams of experts from the US-based Centers of Disease Control and Prevention (CDC), the World Health Organization (WHO) and the Ugandan Ministry of Health have been to the area to look for clues to the cause of this bizarre condition.
The CDC’s team leader, Dr. Scott Dowell, says despite multiple tests at some of the world’s most advanced laboratories, they can’t figure out the cause. “I wish we knew. It’s really frustrating,” he says.
They have, however, narrowed it down. “We know now from the most recent investigation that it is a brain disease,” says Dowell. “We’ve documented by MRI scans that the brains have some atrophy and by EEG that the brain waves are abnormal.”
Nodding disease has also been documented in small pockets of Sudan, just to the north of Uganda.
In both areas, the impact of the disease is matched by a feeling of helplessness among the families of these children, none of which have recovered.
David Lindsay is the Managing Editor of Global Health Frontline News
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That’s a radical change for the population. They finally have access to modern medicine.”
The tiny island of Haiti is one of the most densely populated and poorest countries in the world. Its latest report says that at least half the population lives in the countryside, with no access to safe drinking water and health care. There are just three doctors for every 10,000 Haitians.
But there’s one thing they have plenty of. Sunshine is free and finally someone is tapping into it.
Getting to Boucan Carre is no easy feat. It’s only 45 miles, or 70 kilometers, from the capital of Port-au-Prince, but it takes an arduous three hour drive to get there.
Located in the Central Plateau, Boucan Carre and its mountainous remote communities have been cut-off from the rest of the country for years. Most of its 58,000 inhabitants have never been to Port-au-Prince. There are virtually no roads, and in the rainy season, the smallest path is flooded. Until two years ago, it had a tiny health center that functioned mostly in the dark, even in daylight hours.
Cate Oswald is the program director for the U.S.-based non-profit Partners in Health. She arrived in here five years ago.
“What we found was a small two room clinic, no doctors,” she said. “Not only did we go without electricity because we couldn’t get gas out, but we also had women in labor trying to cross the river and not able to. We ended up losing a number of patients because of that.”
But tucked away in the mountains is its hope for the future: the St. Michel Hospital. Built and run with Partners in Health funding, it’s powered by an abundant resource: the sun.
Driving the jeep on the rocky road to the town, Jean Baptiste Certain of the Solar Electric Light Fund (SELF) told us:“To bring solar panels and fragile electronic equipment and very large batteries on a dirt road for hours is not the easiest thing to do.”
But all 66 solar panels did make it, thanks to the efforts of SELF. Today Boucan Carre has a fully-equipped hospital with power 24 hours, seven days a week.
Certain told us, “That’s a radical change for the population. They finally have access to modern medicine.”
Now young and old patients benefit from a laboratory complete with electron microscope, radiology equipment and a state of the art surgery room.
In the hospital’s crowded waiting area, an ultra-violet light is on to kill the bacteria of coughing tuberculosis patients. The fan circulates the air preventing the infection of other patients and staff.
Dr. Moise Compere told us, “Its a tremendous difference, whether it’s the laboratory where the machines can’t run without the solar panels, radiology, and especially our surgery room.”
Inside the women’s ward, Dr. Compere talks to Narcisse Dieudonne, who brought her daughter to St. Michel Hospital.
Narcisse told us, “Thank the Lord we came here. My little one got to see a doctor right away.”
A bank of solar batteries are the lifeline. They require skilled maintenance and recharging.
Andre Poteau Geles is one of the technicians trained by SELF. He’s been here for 10 years, and as the logistics manager has seen a vast change.
“When we started here with our little health clinic, we didn’t have power. It wasn’t until 2003 that we finally got a generator. Very often we couldn’t get the fuel up here and we had to work in the dark.”
Ironically, it’s thanks to the dirt road built to transport the solar panels to Boucan Carre, that the Haitian government finally started installing the first electric poles ever here… just two months ago. But with Haiti’s weak and unreliable grid, they might at best come in handy to recharge the solar batteries, says Certain.
“It’s highly unreliable, at best a couple of hours per day.”
Meanwhile, St. Michel is already well on the path to improving and guaranteeing the long-term well-being of these remote communities.
As we left, ominous skies foretold the start of the rainy season. The river of hell, as it’s called, will overflow. Only now Boucan Carre won’t be left in the dark.
That is our fight, to make the victim understand that you don't have to be ashamed."
Violence against women is an issue that people in Haiti are all too familiar with.
Two years after the country’s devastating earthquake, the UNHCR reports an alarming upsurge in rape cases against women and children of all ages in the squalid refugee camps. But there are some who have had the courage to take on the system and become crusaders for women's rights.
Jocie Philistin has been fighting to criminalize rape and stop violence against women in Haiti for 15 years. A first victory was making rape a crime in 2005.
"Violence against women and young girls in Haiti has always been taken for granted,” says Jocie. “It's been a huge victory in Haiti, that now it is considered a crime under Haitian law."
Jocie runs Kofaviv, one of the first women's rights organizations in Haiti founded by rape victims. She says it took time to effect change, but becoming a victim of violence herself galvanized her efforts.
In 1994, as a law student, Jocie was on a routine student committee meeting with the military government.
"One of the officials called me into his office. The door slammed shut. It was one of those doors that could only open when pressing a button. He took my clothes off and I fought him off. Thank God the penetration was not all the way, but the atrocity of his violence was hard to fight. He finally let me go."
Jocie says she kept he assault a secret, even while working as an advocate for other rape victims. “I had reconciled myself to the fact that my virginity had not been completely violated. And thought it could be forgotten."
Still, she filed a complaint, never expecting to see him again. "I was working in prisons… preaching. When I saw him in jail, I relived all the atrocities of that day. That's when I realized the post-traumatic conditions were still very much alive."
It proved a turning point for Jocie. Today she coordinates Kofaviv, providing one of the few “safe houses” in a dilapidated capital that remains dangerous territory for unprotected women and children living in appalling conditions in the refugee camps.
Despite the change in the law, few rape cases have been brought to justice, especially in a country where human rights groups say poverty and weak state institutions foster a climate of impunity. Jocie told us, “There's always a problem applying the law when you have a dysfunctional justice system that instills fear among the population, especially the victims who are the most vulnerable and live in marginalized conditions."
But while she will never forget, she still has hope.
“One can, over time, maybe heal a little, self-channel. But it's an act you can never forget. Because you don't want a rape to diminish you, to marginalize you in society. And that is our fight, to make the victim understand that you don't have to be ashamed."
It was around seven at night. The man came up from behind and put a gun to my head."
Getting food, clean water and medical treatment in Haiti's refugee camps is challenging enough for families displaced by the earthquake.
But now, the U.N. High Commissioner for Refugees is reporting an alarming increase in rapes and violence against young girls and adult women in these camps.
One refugee told GHFN, “It was around seven at night. This man came up from behind and put a gun to my head.”
Another rape victim told us, “You can try to resign yourself, but you can never forget. An act like that, one can never forget.”
Still another said, “I felt my life was finished. That I would never again be able to function in society again.”
They are all victims of one of the worst forms of violence against women. Yet in Haiti, rape wasn’t even a crime until seven years ago.
Jocie Philistin, a coordinator of an organization running one of the few camp “safe houses” told us, "Violence against women and young girls in Haiti has always been taken for granted. It's been a huge victory in Haiti, that now it is considered a crime under Haitian law."
Jocie Philistin is one of the pioneers of the 2005 law that finally made rape a crime.
A former rape victim, today she is the coordinator of Kofaviv, a Haitian women’s rights organization formed by rape victims. She says the law has helped educate women on their rights, but few cases have been brought to justice, especially in a country where human rights groups say poverty and weak state institutions foster a climate of impunity.
“There's always a problem applying the law when you have a dysfunctional justice system that instills fear among the population, especially the victims who are the most vulnerable and live in marginalized conditions."
In January 2010, a devastating earthquake struck Port-au-Prince, Haiti's densely populated capital, killing more than 200,000 people. With 2.8 million inhabitants mostly living in overcrowded poor neighborhoods, its long-term impact is catastrophic.
A million and a half Haitians were left homeless, finding shelter in tent-cities that mushroomed overnight throughout the capital. Thousands of children, adolescents and adult women were thrust into a no-man's land, with no protection.
Jocie told us, "These are people who lived in low income neighborhoods. Even if they lived in slums, they lived in a community where everyone knew each other.”
Within seconds, that social safety net of communities was leveled and transformed overnight into a chaotic landscape of survivors.
"You find yourself in a camp where you don't know your neighbor. You look around, up, down, to the side, and you don't know a soul. People are living in inhumane, degrading conditions and everyone is exposed. There is no security."
More than two years later, half a million-plus refugees still remain in the decaying camps.
With international emergency aid exhausted, they are among the most vulnerable, no longer receiving basic needs like drinking water, sanitation services or security.
The UNHCR says one of the most notorious camps, where an upsurge in rape attacks has been taking place, is Champs de Mars camp, right in front of the collapsed presidential palace.
In its narrow alleys we found Yuseline Marcellus, a 16-year old girl who says she was gang-raped in the camp last November.
She became pregnant. Without family and nowhere to turn, she says, she turned to prostitution to feed her 4-month old child.
With her head in her hands, she told us, "There were ten of them. It's hard. It hurts a lot, it's always in my mind. I can't forget."
We were led to Yuseline's tent by two young men, Carlos and Ludner, who volunteer to protect her and other young women here.
Carolos told us, "Since I've been living in the camp for two years, I see many little girls been raped, nine-year old girls, young people, old people, they don't care.”
“We try to stop that right now. We made a group, fifty guys, to try to stop the rape, but you know we can't, we just can't."
Philistin says there's been notable progress and help from the Haitian police, pointing to 450 officially registered complaints so far this year. But with a judicial system still in limbo, many of those cases may never see their day in court.
On the other side of town, at Camp Nicaragua, Delna Charlotin is both refugee and president of the camp's women watchdog group, one of sixteen "frontline" volunteer associations working day and night throughout the camps.
Delna and her committee check regularly through the camp to make sure everyone’s flashlight has working batteries, and especially that every female has a whistle.
"We give all the women a whistle so that if any of them feel threatened, they can just blow it and everyone will be on alert and come to her rescue."
When they locate a victim in a camp, they refer her to a place like Kofaviv, which has one of the few safehouses in the capital.
Kofaviv's community workers are for the most part victims of rape or other violence themselves.
Philistin explained, “In a first phase we relocate the victim and her family. The mother and children are placed in a secure setting. During that time, the victim is sensitized to issues of reproductive health, gender-based violence, family planning and community support."
"The second phase is the reintegration of these victims. Once they leave the safehouse, they don't return to the camp."
In the final stages, Kofaviv will ensure up to a year's rent for the woman and her family, and pay for the children's schooling and health.
"We want the assistance to help them get back on their feet," Philistin says.
But for most of these women, it's hard to forget.
Rosamirlande, one of the camp inhabitants, told us she still has hope.
Smiling, she said, “Yes, I think I can have a second life.”
Brunson says many water projects in developing countries fail for obvious reasons - money runs out, or machinery breaks down."
Access to safe drinking water is a global problem for nearly a billion people.
For about 200 million, many in Africa, high levels of naturally occurring fluoride in the water causes disfiguring dental and skeletal disease.
“Dental fluorosis is a darkening or mottling of the teeth,” says Laura Brunson, an environmental scientist at the University of Oklahoma in the United States. “There is a sort of social stigma attached to it, maybe a poverty stigma. Skeletal fluorosis is much more physically debilitating.”
But Brunson is on the case. She's developing fluoride-filtering devices that use cheap materials that are readily available in the villages. A resident with a kiln, for example, could create the char from eucalyptus wood, or bones.
The low-cost filter would treat the water, which can then be sold for a minimal cost. That would both provide fluoride-treated water to the community and give the person who's running that business a job.
During recent field work in Ethiopia, Brunson and her team set up a lab in a local guest house - and started experimenting.
“Are there things we can add,” asks Brunson, “or ways we can alter the bone char either through some sort of oxidation process, or through adding something like aluminum to the material, that would make it even more effective?”
Brunson says many water projects in developing countries fail for obvious reasons - money runs out, or machinery breaks down.
“Of the seven or eight communities we visited, there only were maybe two that were actually functioning as far as treatment systems.”
But equally important, she says, are cultural factors. Figuring out how to get the community behind a water filtering project.
The team spoke to a lot of people, and asked a lot of questions.
“How do you use water, where do you get it from, what do you think about the current treatment system, is there something you would prefer to have?”
Brunson, who also teaches in the college of business, says getting communities committed to water treatment could also be a money-making opportunity for local people.
“If you can set up a business so that the char you are selling that is helping people get treated water is making enough money so you can be self sustaining, then you can keep going,” says Brunson.
Science and social entrepreneurship coming together to make affordable, safe water available to millions.
The World Health Organization says this type of pollution causes nearly two million premature deaths each year."
An estimated three billion people - nearly half the world’s population - still use an open fire as the primary source of energy for cooking and heating.
But there’s a problem: the smoke.
“You have respiratory issues, lung disease, you’ve got pneumonia and you’ve got longer-term issues like cancer and heart disease as well that can result from exposure to indoor air pollution,” says Radha Muthiah, Executive Director of the Global Alliance for Clean Cookstoves.
The World Health Organization says this type of pollution causes nearly two million premature deaths each year. That’s more than tuberculosis and three times as many as malaria.
Everline Kihulla is one of the people trying to do something about it. She works for TaTedo, which manufactures and sells so-called ‘clean cookstoves’ in Tanzania.
TaTedo’s stoves are made with clay liners, which along with other simple design features, emit far less smoke and pollutants. And they use a fraction of the fuel.
Kihulla crouches beside one of them: “This one we have improved it and it currently uses almost 50 percent compared to the traditional one,” she says. “So the charcoal consumption here is less compared to the traditional one.”
Another benefit is that these stoves are made locally.
A nearby workshop employs 21 people and churns out 400 to 500 stoves each month.
Each person follows a cookstove through every stage of production, from pottery to painting. This teaches each worker a variety of skills.
Producing locally also boosts the economy and keeps the costs down, but the price-point is still an issue.
Cookstoves start at about $6 (U.S.). That’s a lot of money for many families in developing countries.
But subsidizing the price, or even giving stoves away free with the help of aid agencies, doesn’t necessarily work.
“There’s something about, you know, having to allocate a portion of even your small wallet to something that ensures that you value that and use that, and so that’s what we’ve seen in some of the other models that are out there,” says Muthiah.
“The fact that yes, people don’t have that much money at all, but if they spend even a few cents a day, you know, towards that stove, that they actually value and use it much more.”
Sitting alone on the steps of her home in Dar es Salaam, Lillian Njuu stirs a large pot of stew, which rests on a clean stove that she has used for two years.
She feels the expense is worth it for the health of her family, and plans to buy another.
In addition, while the upfront cost to buy a clean cookstove is higher, the fuel costs are lower because it burns less.
That in turn has an environmental impact. Burning less charcoal or wood means there’s less deforestation, which has caused major problems like flooding in many countries.
“It’s one relatively simple intervention that has a multitude of impacts that can really address the development agenda within a particular country as well,” says Muthiah.
Now the challenge is to get clean stoves into enough homes to really make a difference.
others. He spends most of his time sitting on the hot dusty ground, angry and confused, while villagers pass by at a safe distance.
