Undiagnosed cerebral disease - Uganda: (TG) nodding disease
Date: Mon 10 Aug 2009
Source: AllAfrica, UN Office for the Coordination of Humanitarian
Affairs (OCHA), Integrated Regional Information Networks (IRIN) News
report [edited]
<http://allafrica.com/stories/printable/200908101360.html>
Uganda: nodding disease or 'river epilepsy'
-------------------------------------------
A rare and unexplained brain disease has affected hundreds of Ugandan
children, health workers say. The "nodding disease" causes seizures,
and affected children become physically and mentally stunted, which
can lead to blindness and even death.
"Nodding disease" is not unknown to medical science, but the
best-known concentration of cases had previously been reported from
southern Sudan. A medical NGO in the Mundri area of western Equatoria
had reported an estimated 300 cases around 2003.
Northern Uganda's Kitgum district, an area recovering from 2 decades
of civil war, appears a new epicentre of the disease. Local leaders
Obonyo Yokoyedo told IRIN that 200 children in his village of Okidi
alone had the illness. "We have lost 3 girls... one drowned in a well
during a seizure; the other 2 went several weeks without eating," he
said.
Janet Oola, Kitgum health officer, said hundreds of children had
presented symptoms of the "nodding disease" in the district in 2008.
"It is an early stage of epilepsy," she added.
A likely cause of the disease is a neurological effect of the
parasitic worm that causes onchocerciasis (river blindness). Recently
published medical research supports a link and doctors who have
studied nodding in the field say the 2 are connected.
Prof James Tumwine of Makerere University in Kampala, who
participated in a WHO-sponsored investigation into the outbreak in
Sudan, described the disease as a form of epilepsy linked to
onchocerciasis. However he told IRIN he found it "incredible" that
such a large number of cases were being reported in Uganda. "The
infected children need immediate treatment for seizure and
onchocerciasis."
Ugandan health ministry officials confirmed the disease had been
reported in northern Uganda, but its cause was yet to be established.
"It has spread to many villages in Kitgum, and we are working with
WHO to establish the cause," Paul Kagwa, ministry spokesman told
IRIN. "At the moment, it is still a mysterious disease."
River blindness is transmitted by black flies infected by the
filarial worm _Onchocerca volvulus_. It is endemic in 30 African
countries. A major public health campaign focuses on annual treatment
with the drug ivermectin, supplied free by manufacturer Merck & Co
Inc. The programme in Africa has over 50 million people receiving
treatment.
A medical officer in Uganda's northern Gulu district, who preferred
anonymity, told IRIN that cases of nodding disease had been reported
in Awere village in 2008. A health ministry team visited Gulu,
Kitgum, and Pader and found that the disease was more common among
people living near streams. Five streams -- Pager, Lakankodi, Adinga,
Lanyalyang, and Anyuka -- cut across the affected villages.
Proving the link has not been easy, and research into other possible
causes such as toxins has not produced answers. An epidemiological
study in 2004 was inconclusive.
A study in December 2008 suggests that the "seizure disorder" had
been reported in Tanzania as long ago as the 1960s and should be
treated as a "syndrome" whose possible link to onchocerciasis was
"intriguing."
In June 2009, a review of studies in 8 African countries, including
Uganda, looked at the statistical links between river blindness and
epilepsy and found that for every 10 percent increase in the
prevalence of onchocerciasis, epilepsy rates go up 0.4 percent.
The report's authors say they found "a close epidemiological
association between the 2 diseases" in the data of over 70 000
patients. The study, in the PLOS Neglected Tropical Diseases journal
goes on to suggest a new terminology: Should a causative relationship
be demonstrated, onchocerciasis [...] could thus also be called
"river epilepsy."
Epilepsy affects some 50 million people worldwide, according to the
WHO. "Seizures can vary from the briefest lapses of attention or
muscle jerks, to severe and prolonged convulsions," according to a
WHO fact sheet.
Grace Lanyero, a psychiatrist at Kitgum government hospital, said
food seemed to trigger off the attacks among the children she has
seen. "This is a seizure, which begins when the victim begins to
eat," she told IRIN. "The child starts nodding with uncoordinated
hand movements that don't reach the mouth." The affected children,
she added, were being treated with anti-convulsive drugs and
medicines to relax the muscles and control nodding.
[One parent] cannot understand what ails her 2 grandchildren, who
have been bedridden for 3 weeks. The children nod endlessly whenever
food is presented to them, and cannot eat properly. "I tried all
means of treatment in Kitgum government hospital, but nothing
[worked]," she said. "I even tried a traditional healer who
slaughtered a black goat but nothing has worked."
[Another parent] from Pajule village in Pader District told IRIN that
her 14-year-old son developed the complication in mid-2005. All
attempts to treat him have failed. "He started presenting unusual
behavior; whenever food is brought for him, he nods and fails to put
food into his mouth," she said. Sometimes, he would appear to have
lost his memory, start nodding, and eventually fall to the ground.
The boy's father, developed similar symptoms and eventually lost his
sight, Aweko said.
The WHO website cites nodding disease as an example of a disease that
is not fully understood.
Affairs (OCHA), Integrated Regional Information Networks (IRIN) News
report [edited]
<http://allafrica.com/stories/printable/200908101360.html>
Uganda: nodding disease or 'river epilepsy'
-------------------------------------------
A rare and unexplained brain disease has affected hundreds of Ugandan
children, health workers say. The "nodding disease" causes seizures,
and affected children become physically and mentally stunted, which
can lead to blindness and even death.
"Nodding disease" is not unknown to medical science, but the
best-known concentration of cases had previously been reported from
southern Sudan. A medical NGO in the Mundri area of western Equatoria
had reported an estimated 300 cases around 2003.
Northern Uganda's Kitgum district, an area recovering from 2 decades
of civil war, appears a new epicentre of the disease. Local leaders
Obonyo Yokoyedo told IRIN that 200 children in his village of Okidi
alone had the illness. "We have lost 3 girls... one drowned in a well
during a seizure; the other 2 went several weeks without eating," he
said.
Janet Oola, Kitgum health officer, said hundreds of children had
presented symptoms of the "nodding disease" in the district in 2008.
"It is an early stage of epilepsy," she added.
A likely cause of the disease is a neurological effect of the
parasitic worm that causes onchocerciasis (river blindness). Recently
published medical research supports a link and doctors who have
studied nodding in the field say the 2 are connected.
Prof James Tumwine of Makerere University in Kampala, who
participated in a WHO-sponsored investigation into the outbreak in
Sudan, described the disease as a form of epilepsy linked to
onchocerciasis. However he told IRIN he found it "incredible" that
such a large number of cases were being reported in Uganda. "The
infected children need immediate treatment for seizure and
onchocerciasis."
Ugandan health ministry officials confirmed the disease had been
reported in northern Uganda, but its cause was yet to be established.
"It has spread to many villages in Kitgum, and we are working with
WHO to establish the cause," Paul Kagwa, ministry spokesman told
IRIN. "At the moment, it is still a mysterious disease."
River blindness is transmitted by black flies infected by the
filarial worm _Onchocerca volvulus_. It is endemic in 30 African
countries. A major public health campaign focuses on annual treatment
with the drug ivermectin, supplied free by manufacturer Merck & Co
Inc. The programme in Africa has over 50 million people receiving
treatment.
A medical officer in Uganda's northern Gulu district, who preferred
anonymity, told IRIN that cases of nodding disease had been reported
in Awere village in 2008. A health ministry team visited Gulu,
Kitgum, and Pader and found that the disease was more common among
people living near streams. Five streams -- Pager, Lakankodi, Adinga,
Lanyalyang, and Anyuka -- cut across the affected villages.
Proving the link has not been easy, and research into other possible
causes such as toxins has not produced answers. An epidemiological
study in 2004 was inconclusive.
A study in December 2008 suggests that the "seizure disorder" had
been reported in Tanzania as long ago as the 1960s and should be
treated as a "syndrome" whose possible link to onchocerciasis was
"intriguing."
In June 2009, a review of studies in 8 African countries, including
Uganda, looked at the statistical links between river blindness and
epilepsy and found that for every 10 percent increase in the
prevalence of onchocerciasis, epilepsy rates go up 0.4 percent.
The report's authors say they found "a close epidemiological
association between the 2 diseases" in the data of over 70 000
patients. The study, in the PLOS Neglected Tropical Diseases journal
goes on to suggest a new terminology: Should a causative relationship
be demonstrated, onchocerciasis [...] could thus also be called
"river epilepsy."
Epilepsy affects some 50 million people worldwide, according to the
WHO. "Seizures can vary from the briefest lapses of attention or
muscle jerks, to severe and prolonged convulsions," according to a
WHO fact sheet.
Grace Lanyero, a psychiatrist at Kitgum government hospital, said
food seemed to trigger off the attacks among the children she has
seen. "This is a seizure, which begins when the victim begins to
eat," she told IRIN. "The child starts nodding with uncoordinated
hand movements that don't reach the mouth." The affected children,
she added, were being treated with anti-convulsive drugs and
medicines to relax the muscles and control nodding.
[One parent] cannot understand what ails her 2 grandchildren, who
have been bedridden for 3 weeks. The children nod endlessly whenever
food is presented to them, and cannot eat properly. "I tried all
means of treatment in Kitgum government hospital, but nothing
[worked]," she said. "I even tried a traditional healer who
slaughtered a black goat but nothing has worked."
[Another parent] from Pajule village in Pader District told IRIN that
her 14-year-old son developed the complication in mid-2005. All
attempts to treat him have failed. "He started presenting unusual
behavior; whenever food is brought for him, he nods and fails to put
food into his mouth," she said. Sometimes, he would appear to have
lost his memory, start nodding, and eventually fall to the ground.
The boy's father, developed similar symptoms and eventually lost his
sight, Aweko said.
The WHO website cites nodding disease as an example of a disease that
is not fully understood.
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