Plagues,
Pestilences and Diseases
Mystery 'nodding' disease devastates northern Uganda
By Jocelyn Edwards | Reuters
PADER DISTRICT, Uganda (Reuters) - Most mornings, Michael
Odongkara takes his daughter Nancy Lamwaka outside and ties her
ankle to a mango tree.
It's not something he likes to do. But the disease that gives the
12-year-old violent seizures has so diminished her mental capacity
that she no longer talks and often wanders off. Once, she was lost
in the bush for three days.
"It hurts me so much to tie my own daughter to a tree ... but
because I want to save her life, I am forced to. I don't want her
to (get) loose and die in a fire, or walk and get lost in the
bushes, or even drown in the nearby swamps," he said.
Lamwaka suffers from nodding syndrome, a disease of unknown
origins and no known cure, which Ugandan authorities estimate
affects more than 3,000 children in the country.
Named after its seizure-like episodes of head nodding, the
disease, which mostly affects children between five and 15, has
killed more than 200 children in Uganda in the past three years.
Thousands of children in South Sudan are also sufferers.
As the seizures are often triggered by food, children who have
nodding syndrome become undernourished and mentally and physically
stunted.
"There is a general effect on their neurological system to the
extent that some can be impaired in vision, eating and even mere
recognition of their immediate environment," said Dr. Emmanuel
Tenywa, a country advisor in disease control for the World Health
Organization (WHO) in Uganda.
As her father watched helplessly from under a nearby tree, Lamwaka
cried out and began to convulse. Saliva flowed from her mouth and
her whole body shook for a few minutes until she finally went limp
in the dust. Lamwaka has had episodes like this up to five times a
day for the past eight years, and her health has steadily
deteriorated.
"When she was talking she would ask for food," he said. "These
days she just stretches out her hand begging for it."
WHY DOES IT HAPPEN?
Nodding syndrome was first documented in Tanzania as early as
1962. Fifty years later, researchers still don't know what it is.
"We have a long list of things that are not causing nodding
disease. We still don't have a definitive cause," said Dr. Scott
Dowell, director of the division of global disease detection and
emergency response of the Centers for Disease Control (CDC).
Officials from the Atlanta, Georgia-based CDC were in Uganda for
nine days in February on the latest of three trips to investigate
the disease.
"We have ruled out, through our field studies and our laboratory
testing, more than three different hypothesized causes including .
. . 18 virus families with hundreds of members," said Dowell.
It's a relatively rare situation for the CDC to be in; of 600
outbreaks of illnesses investigated by the organization's division
of global disease detection, just six are unresolved.
Although they have no reason to believe the disease will spread,
researchers can never be certain. Dowell cites "slim disease,"
which emerged in West Africa in the 1980s and turned out to be the
beginnings of AIDs.
POSSIBLE LEADS
The researchers do have some leads: one is a possible link with
the black fly-borne parasite that causes river blindness, or
onchocerciasis.
"All of these cases are reported in areas where there is
onchocerciasis, so we strongly think there is a relationship
between the two," said Dr. Tenywa of the WHO.
Investigators say they plan to do genetic testing on skin samples
taken from the children to try to establish a link.
"In the coming weeks we anticipate learning a lot more about
whether this is a variant of onchocerciasis or whether it might be
some other sort of parasite that looks like onchocerciasis," said
the CDC's Dowell.
Researchers have also observed a deficiency of vitamin B6 in the
populations where the disease is prevalent.
As long as the cause of the disease remains unknown, officials are
focusing on treating its symptoms. CDC researchers met with
Ugandan health officials to discuss how a trial of treatments
would work.
The trial, which could begin as early as May, will test two types
of anti-convulsants as well as vitamin B6 supplements. Some
afflicted children are already on anti-epileptic drugs, with
varying degrees of success.
"I think everybody is in agreement that at this stage it would be
good to have a much better idea about what treatments are working
and if any of them are harmful," Dowell said.
Investigators say that they hope to have a protocol for the trial,
which will include 80 children, ready to submit for ethics
approval in Uganda and the United States in a couple of weeks.
BITTERNESS
But for those who have been living with the disease and its
effects, it all seems to be moving very slowly. In Uganda,
frustration over the government response is growing.
"People are very bitter and they think the government has
abandoned them," said Martin Ojara, local council coordinator for
the Acholi sub-region in Uganda, which is where the disease is
concentrated.
Though the government recently announced a plan to establish
treatment centers and bring in health workers to address the
disease, some say it's too little, too late.
A request by the Health Ministry for 3.8 billion Ugandan Shillings
(about $1.5 million) to fight the disease was not included in the
supplementary budget recently submitted to parliament for
approval. The finance ministry, which said the request was late,
has instructed health authorities to reallocate funds from their
existing budget until the next supplementary budget.
"It is very sad," said Beatrice Anywar, an opposition member of
parliament for one of the most affected areas. "It shows how the
government really doesn't care."
The government maintains it has been seeking a cause and treatment
for the disease since it first surfaced.
"There have been a lot of attempts, from 2009 to date, to get the
riddle of this situation answered -- what is the problem and how
can it be addressed," Musa Ecweru, the minister of state for
disaster preparedness and emergency response in the prime
minister's office, told reporters in early March.
"Everybody knows that government has not just folded its hands. It
has been doing all it takes to make sure that it will (get) on top
of this situation," he said.
Anywar and others have called for the area to be declared a
disaster zone -- in some villages in her district, almost every
family has a child with nodding disease and some families even
have several, she said.
"The children (with the disease) who are of school-going age
cannot go to school and have no future," said Anywar. "Food
security is a problem because these parents are not productive.
"The parents of these sick children are traumatised by an unknown
disease and literally have lost hope."
ON FIRE
Children with nodding syndrome are prone to accidents such as
drowning and burning because of mental impairment, and many of the
fatalities from the disease are the result of these secondary
causes.
Since she contracted the disease, Lamwaka has had many such
incidents. Her body is covered with bruises from falling and there
are raw, pink wounds on her hands from when she fell into the fire
recently when both of her parents were away.
"She doesn't know that she is on fire, that she is burning until
someone comes and brings her away from the fire," said her father.
He admits he has stopped taking her to the doctor.
"Even if they give us drugs, I'm not sure if the drugs will help,"
said Odongkara.
Sitting in the shade nearby is his mother, Jujupina Ataro, 72. She
has three grandchildren with the disease and spends her time
bathing and feeding them, and even cleaning up their faeces since
they can no longer use the toilet by themselves.
She said many of her neighbours and friends also have children
with the disease.
"I know so many in this area. If a doctor would come you would see
how many people would turn up ... it's uncountable," she said.
"It's like the generation is wiped out."
(Editing by Sonya Hepinstall)