UGANDA/SOUTH SUDAN: Nodding Syndrome - Hundreds of children infected

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UGANDA: Nodding disease or "river epilepsy"?


KITGUM, 10 August 2009 (IRIN) - 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 disctrict, an area recovering from two 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 three girls... one drowned in a well during a seizure; the other two 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 two 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 [World Health Organization] to establish the cause," Paul Kagwa, ministry spokesman told IRIN. "At the moment, it is still a mysterious disease."

River blindness is transmitted by blackflies 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.

http://www.irinnews.org/Report.aspx?ReportId=85646

 

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Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

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ProMED-EAFR:East Africa

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Published Date
2009-08-19 15:59:04
Subject
PRO/EAFR> Nodding disease - Uganda: (Kitgum)
Archive Number
20090819.201333
Full Text

NODDING DISEASE - UGANDA: (KITGUM)
**********************************
A ProMED-mail post
http://www.promedmail.org
ProMED-mail is a program of the
International Society for Infectious Diseases
http://www.isid.org


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.

--
Communicated by:
ProMED-EAFR


[The emergence of cases of nodding disease in Kitgum district
indicates the disease is becoming more widespread in the region. As
indicated in the newswire, cases have been investigated in Southern
Sudan with findings pointing to a possible link to onchocerciasis.
The findings are contained in a WHO document on the circumstantial
evidence suggesting there may be a link between nodding disease and
onchocerciasis:

Dr Hans Remme reported on existing data from WHO on nodding disease.
The information revealed that the occurrence of nodding disease
appears to be focused on one district in South Sudan, Mundri. 4
investigations were conducted in 2001 and 2002. Based on 87
documented cases, nodding and/or seizures are initial symptoms. Other
symptoms include: severe stunting, poor sexual development, and
mental retardation. The age of onset was mostly found to be 9-16 years.

"Nodding disease may be similar to the "Nakalanga" syndrome reported
[along the Nile near Jinja in eastern Uganda] some years ago for
which a link with onchocerciasis was suggested. It was observed that
no more new cases were recorded when elimination of the vector from
the Jinja Focus was achieved in the late 1960s. New cases have been
reported in the Masindi District where ivermectin treatment is
ongoing while in other districts there is a decline in incidence.

The link between onchocerciasis, epilepsy, and ivermectin treatment
is not at present clear and needs to be urgently evaluated. No brain
lesion was found at (computerized tomography) (CT) scans in 5
children in Cameroon with Nakalanga in comparison to controls. In a
study in Cameroon, Nakalanga and/or epilepsy cases had a higher
microfilarial burden than controls. Epidemiological data on the
frequency of epilepsy in relation to the endemicity of onchocerciasis
are inconclusive.

The Nakalanga disease could have a multi-factorial cause, including
onchocerciasis and nutritional factors. The focal nature of epilepsy
could be due to co-factors including,- other epileptogenic infectious
diseases (more frequent close to 30 rivers than further away);
- a specific strain of _O. volvulus_, and - genetic predisposition.

It was suggested that clarifying the link between epilepsy and
onchocerciasis on the one hand, and epilepsy and ivermectin treatment
on the other, could provide data on another benefit of ivermectin
treatment and could interest in particular donors such as UNICEF.

In view of the findings above, it has been recommended that- the
African Program for Onchocerciasis Control (APOC) should
commission a comprehensive epidemiological study on Nodding disease
in South Sudan, to complement available data and to verify and
further characterize the epidemic outbreak; - a subgroup should be
formed to develop an operational research proposal for looking into
the broader issues relating to nodding disease, Nakalanga, epilepsy,
and their association with onchocerciasis and ivermectin treatment.
The subgroup should consider Ivapecin including in the research
agenda a placebo-controlled study of epileptics hospitalized
for rmectin/placebo treatment." (The full document is available at
http://www.who.int/apoc/about/structure/tcc/tcc22_final_report.pdf.)


References
----------
1. Winkler AS, Friedrich K, Koenig R, Meindl M, et al: The head
nodding syndrome - -clinical classification and possible causes.
Epilepsia. 2008 Dec; 49(12): 2008-15. Epub 2008 May 21 (abstract
available at
http://www3.interscience.wiley.com/journal/120120339/abstract?CRETRY=1&SRETRY=0)
2. Lacey M: Nodding disease: mystery of southern Sudan. Lancet
Neurol. 2003 Dec; 2(12): 714 (available at
http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(03)00599-4/fulltext?_eventId=login

-- subscription required). - Mod.MPP]


[In Kitgum district, anecdotal reports indicate that patients with
symptoms of nodding disease have been observed in the district for
the last 20 years. The problem hasn't been well investigated due to
the war that has been going on in the region, hence contributing to
the escalation of the problem over the years. The burden of
onchocerciasis in the district wasn't known till March this year
[2009] when an expert team from The Carter Center confirmed high
endemicity of onchocerciasis in the sub-counties of Amida, Akwang,
Layamo, Palabek Gem, Kitgum Matidi, Palabek Ogili, and Mucwini. The
team found that close to 60 percent of children below 15 years of age
in the endemic sub-counties have onchocerciasis.


There is definitely need to investigate further and establish the
link between the nodding disease and onchocerciasis as suggested
above. This should guide the initiation of appropriate control
measures. Current control measures, however, need to concentrate on
treating epilepsy and initiating measures to control onchocerciasis.
Community-directed treatment with ivermectin (CDTI) should be
initiated in the district to control and eliminate onchocerciasis
from the district. This is the core strategy for the African Program
for Onchocerciasis control (APOC)
http://www.who.int/apoc/en/index.html. The strategy relies on
active community participation to distribute ivermectin treatment to
people who need it. The intervention should be complemented with
river dosing using acaricides to destroy the water crabs that harbor
the black fly larvae.


Kitgum district in Northern Uganda can be located on the maps at
http://www.coetzee-uganda.com/index_files/District_Map_of_Uganda.htm
and the HealthMap/ProMED-mail interactive map at
http://healthmap.org/r/00Hu. - Mod.JFW]


[For background information on nodding disease and its relation with
onchocerciasis, available from the general ProMED-mail list, the
postings below can be found at
http://www.promedmail.org. - Mod.JFW]


[2003
----
Undiagnosed cerebral disease, children - Sudan (02) 20030925.2423
Undiagnosed cerebral disease, children - Sudan 20030924.2417]
...................................mpp/jfw/mj/be

_______________________________________________
ProMED-EAFR mailing list
ProMED-EAFR@promedmail.org
http://eafr.promedmail.org/

 

[alert]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

And now ProMed jumps in on this one. I don't think I've ever seen ProMed use the header "Undiagnosed cerebral disease" before.

http://www.promedmail.org/pls/otn/f..._BACK_PAGE,F2400_P1001_PUB_MAIL_ID:1000,78877

Archive Number 20090820.2952
Published Date 20-AUG-2009
Subject PRO/AH/EDR> Undiagnosed cerebral disease - Uganda: (TG) nodding disease

UNDIAGNOSED CEREBRAL DISEASE - UGANDA: (KITGUM) NODDING DISEASE
***************************************************************
A ProMED-mail post
<http://www.promedmail.org>
ProMED-mail is a program of the
International Society for Infectious Diseases
<http://www.isid.org>

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.

--
Communicated by:
ProMED-EAFR
<promed-eafr@promedmail.org>

[The emergence of cases of nodding disease in Kitgum district
indicates the disease is becoming more widespread in the region.
Cases have been reported in Sudan dating back to the 1980s (see
references below), Uganda and Tanzania, and an association of
epilepsy with onchocerciasis has been postulated and studied since
the 1990s (see references below).

The findings of studies into this association in the Sudan were
summarized in a WHO document discussing the circumstantial evidence
suggesting there may be a link between nodding disease and
onchocerciasis:

"Dr Hans Remme reported on existing data from WHO on nodding disease.
The information revealed that the occurrence of nodding disease
appears to be focused on one district in South Sudan, Mundri. 4
investigations were conducted in 2001 and 2002. Based on 87
documented cases, nodding and/or seizures are initial symptoms. Other
symptoms include: severe stunting, poor sexual development, and
mental retardation. The age of onset was mostly found to be 9-16
years.

"Nodding disease may be similar to the "Nakalanga" syndrome reported
[along the Nile near Jinja in eastern Uganda] some years ago for
which a link with onchocerciasis was suggested. It was observed that
no more new cases were recorded when elimination of the vector from
the Jinja Focus was achieved in the late 1960s. New cases have been
reported in the Masindi District where ivermectin treatment is
ongoing while in other districts there is a decline in incidence.

"The link between onchocerciasis, epilepsy, and ivermectin treatment
is not at present clear and needs to be urgently evaluated. No brain
lesion was found at (computerized tomography) (CT) scans in 5
children in Cameroon with Nakalanga in comparison to controls. In a
study in Cameroon, Nakalanga and/or epilepsy cases had a higher
microfilarial burden than controls. Epidemiological data on the
frequency of epilepsy in relation to the endemicity of onchocerciasis
are inconclusive.

"The Nakalanga disease could have a multi-factorial cause, including
onchocerciasis and nutritional factors. The focal nature of epilepsy
could be due to co-factors including,
- other epileptogenic infectious diseases (more frequent close to
rivers than further away);
- a specific strain of _O. volvulus_, and
- genetic predisposition.

It was suggested that clarifying the link between epilepsy and
onchocerciasis on the one hand, and epilepsy and ivermectin treatment
on the other, could provide data on another benefit of ivermectin
treatment and could interest in particular donors such as UNICEF.

In view of the findings above, it has been recommended that
- the African Program for Onchocerciasis Control (APOC) should
commission a comprehensive epidemiological study on Nodding disease
in South Sudan, to complement available data and to verify and
further characterize the epidemic outbreak;
- a subgroup should be formed to develop an operational research
proposal for looking into the broader issues relating to nodding
disease, Nakalanga, epilepsy, and their association with
onchocerciasis and ivermectin treatment. The subgroup should consider
including in the research agenda a placebo-controlled study of
epileptics hospitalized for ivermectin/placebo treatment." (The full
document is available at <
http://www.who.int/apoc/about/structure/tcc/tcc22_final_report.pdf >.)

Interestingly, a review of studies addressing this possible
association with a meta-analysis of existing data, did not show an
association (see ref 3 below). Of interest, a table contained in
Marin B et al. comparing studies (both peer reviewed, and personal
communications) seemed to demonstrate statistically significant
associations between onchocerciasis and epilepsy in Uganda (refs 5,
6), Tanzania (M Tayler, unpublished communications to the authors)
and Burundi, whereas there weren't statistical associations in
studies conducted in Central African Republic, Cameroon, Benin,
Burkina Faso, and Mali. In contrast, in a newly published report by
Pion et al (see ref 7), the authors demonstrated an association
between the prevalence of onchocerciasis in a community and the
prevalence of epilepsy in the community, and explained the difference
in their findings from those of Marin et al as: "A major difference
between the review of Druet-Cabanac et al. [3] and our analysis is
that we introduced the quantitative dimension of _O. volvulus_
infection by defining the onchocerciasis prevalence in a village as
the risk factor." The authors speculated, "In areas of low
endemicity, the possible effect of onchocerciasis on epilepsy in such
an analysis will also be masked by the relatively higher proportion
of epilepsy cases due to alternative aetiologies." They further
explained that, "The mathematical properties of this relationship
implies that the higher the prevalence, the higher the proportion of
individuals with heavy microfilarial loads in the population."

It is clear that "nodding disease" is a real phenomenon in children
in Africa, and from a variety of studies, it seems to be more
prevalent in areas with very high endemicity of onchocerciasis... but
have Koch's postulates been satisfied in defining a cause-effect
relationship here? - Mod.MPP

References
----------
1. Winkler AS, Friedrich K, Koenig R, Meindl M, et al: The head
nodding syndrome - -clinical classification and possible causes.
Epilepsia. 2008 Dec; 49(12): 2008-15. Epub 2008 May 21 (abstract
available at
<http://www3.interscience.wiley.com/journal/120120339/abstract?CRETRY=1&SRETRY=0>).
2. Lacey M: Nodding disease: mystery of southern Sudan. Lancet
Neurol. 2003 Dec; 2(12): 714 (available at
<http://www.thelancet.com/journals/laneur/article/PIIS1474-4422%2803%2900599-4/fulltext?_eventId=login>)
[subscription required. - Mod.MPP]
3. Druet-Cabanaca M, Boussinesq M, Dongmoc l, Farnarierd G, et al:
Review of Epidemiological Studies Searching for a Relationship
between Onchocerciasis and Epilepsy. Neuroepidemiology 2004; 23:144-9
(abstract available at
<http://content.karger.com/ProdukteDB/produkte.asp?doi=10.1159/000075958>
4. Marin B, Boussinesq M, Druet-Cabanac M, Kamgno J, et al:
Onchocerciasis-related epilepsy? Prospects at a time of uncertainty.
Trends Parasitol. 2006 Jan; 22(1): 17-20. Epub 2005 Nov 22 (abstract
available at <http://www.ncbi.nlm.nih.gov/pubmed/16307906>).
5. Ovuga E, Kipp W, Mungherera M, Kasoro S: Epilepsy and retarded
growth in a hyperendemic focus of onchocerciasis in rural western
Uganda. East Afr Med J 1992 Oct; 69(1): 554-6 (abstract available at
<http://www.ncbi.nlm.nih.gov/pubmed/1473507>).
6. Kipp W, Kasoro S, Burnham G: Onchocerciasis and epilepsy in
Uganda. Lancet. 1994 Jan 15; 343(8890): 183-4. Letter to the editor,
no abstract.
7. Pion SD, Kaiser C, Boutros-Toni F, Cournil A, et al: Epilepsy in
Onchocerciasis Endemic Areas: Systematic Review and Meta-analysis of
Population-Based Surveys. PLoS Negl Trop Dis. 2009 Jun 16; 3(6):e461
(full article available at
<http://www.plosntds.org/article/info%3Adoi%2F10.1371%2Fjournal.pntd.0000461>).
8. Kaiser C, Kipp W, Asaba G, Mugisa, et al: The prevalence of
epilepsy follows the distribution of onchocerciasis in a west Ugandan
focus. Bull World Health Organ. 1996; 74(4): 361-7 (full article
available at
<http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=8823957>).
9. Newell ED, Vyungimana F, Bradley JE: Epilepsy, retarded growth and
onchocerciasis, in two areas of different endemicity of
onchocerciasis in Burundi. Trans R Soc Trop Med Hyg. 1997 Sep-Oct;
91(5): 525-7 (abstract available at
<http://www.journals.elsevierhealth.com/periodicals/trstmh/article/PIIS0035920397900092/abstract>.
- Mod.MPP]

[In Kitgum district, anecdotal reports indicate that patients with
symptoms of nodding disease have been observed in the district for
the last 20 years. The problem hasn't been well investigated due to
the war that has been going on in the region, hence contributing to
the escalation of the problem over the years. The burden of
onchocerciasis in the district wasn't known till March this year
[2009] when an expert team from The Carter Center confirmed high
endemicity of onchocerciasis in the sub-counties of Amida, Akwang,
Layamo, Palabek Gem, Kitgum Matidi, Palabek Ogili, and Mucwini. The
team found that close to 60 percent of children below 15 years of age
in the endemic sub-counties have onchocerciasis.

There is definitely need to investigate further and establish the
link between the nodding disease and onchocerciasis as suggested
above. This should guide the initiation of appropriate control
measures. Current control measures, however, need to concentrate on
treating epilepsy and initiating measures to control onchocerciasis.
Community-directed treatment with ivermectin (CDTI) should be
initiated in the district to control and eliminate onchocerciasis
from the district. This is the core strategy for the African Program
for Onchocerciasis control (APOC) <
http://www.who.int/apoc/en/index.html>. The strategy relies on active
community participation to distribute ivermectin treatment to people
who need it. The intervention should be complemented with river
dosing using acaricides to destroy the water crabs that harbor the
black fly larvae.

Kitgum district in Northern Uganda can be located on the maps at
<http://www.coetzee-uganda.com/index_files/District_Map_of_Uganda.htm>
and the HealthMap/ProMED-mail interactive map at
<http://healthmap.org/r/00Hu>. - Mod.JFW]

[It should be pointed out that neurocysticercosis is a possible
cause. At present, the link to onchocerciasis is highly speculative,
whereas neurocysticercosis is a well known cause of neurological
symptoms in African children. - Mod.EP]

[see also
2003
----
Undiagnosed cerebral disease, children - Sudan (02) 20030925.2423
Undiagnosed cerebral disease, children - Sudan 20030924.2417]
...................................mpp/be/jfw/mj/be/mpp/mj/ep/lm

 

[alert]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

A VERY intersting ProMed post.

http://www.promedmail.org/pls/otn/f..._BACK_PAGE,F2400_P1001_PUB_MAIL_ID:1000,78917

UNDIAGNOSED CEREBRAL DISEASE - UGANDA (02): (KITGUM) COMMENT
************************************************************
A ProMED-mail post
<http://www.promedmail.org>
ProMED-mail is a program of the
International Society for Infectious Diseases
<http://www.isid.org>

Date: Mon 24 Aug 2009
From: A Lee Willingham <awi@life.ku.dk> [edited]


Concerning [neurocysticercosis] being a cause of neurological
symptoms in African children
----------------------------------------------------------------------
There is ample evidence that juvenile neurocysticercosis is very
common in endemic areas of South Africa (see Mafojane et al, 2003;
Pro-MED-mail archives 20050506.1254 and 20050521.1407).

We do not know about the situation in other African countries as
studies have not been conducted.

Regarding _Taenia solium_ infections in Uganda:
_T. solium_ is present throughout Uganda as very recent surveys have
indicated porcine cysticercosis to be prevalent nationwide based on
studies conducted in randomly selected districts from different parts
of the country in connection with a FAO Technical Cooperation
Programme supported project and other projects (Waiswa et al, 2009;
personal communication with Prof G Lubega and Dr C Waiswa, Veterinary
Faculty, Makerere University).

Pig keeping and pork consumption are very popular in Uganda, which
has one of the highest and densest populations of pigs on the
continent. Most of these pigs are kept under non-commercial,
smallholder production systems in rural areas whereby the pigs are
allowed to roam about for food in areas where open human defecation
is common and thus they have access to human faeces.

Thus far there have not been any community-based surveys on human
cysticercosis or taeniosis however the German Research Foundation
(DFG) has just awarded a grant to Dr AS Winkler (neurologist,
University of Munich, Germany), Prof William Matuja (neurologist,
Muhimbili University of Health and Allied Sciences, Tanzania), Prof
Emilio Ovuga (psychiatrist and public health specialist, Gulu
University, Uganda), and colleagues to conduct a study on the
association between epilepsy and neurocysticercosis in Uganda and
Tanzania through cross-sectional, community-based evaluations.

With regard to epilepsy and its attribution being due to
onchocerciasis or neurocysticercosis:
Controversy arose last year [2008] concerning epileptic seizures in
Uganda being attributed to onchocerciasis as opposed to
neurocysticercosis as a monitoring programme for onchocerciasis
intervention based on detection of "onchocercomas" indicated that
many of the skin nodules turned out to be caused by subcutaneous
cysticercosis (Katabarwa et al, 2008).

This led the monitoring programme to conclude that the prediction of
nodule prevalence for noninvasive rapid epidemiologic assessment
(REA) to target areas for mass chemotherapy with ivermectin in the
intervention programme-supported areas may have been influenced by
other pathologies and that _T. solium_ infection may actually be the
main cause of "onchocerciasis associated epileptic seizures" in many
onchocerciasis endemic communities that have been causally linked to
onchocerciasis.

However, another team of scientists countered that a positive
correlation between onchocerciasis and epilepsy has been demonstrated
in onchocerciasis endemic areas of Africa where it was unlikely that
the epilepsy was caused by neurocysticercosis though whether the
epilepsy was actually attributable to onchocerciasis is not known
(Kaiser et al, 2008). Both groups of scientists have highlighted the
need to conduct further studies combining appropriate
neuroepidemiologic, clinical, and parasitologic methods to clarify
the etiology of epilepsy in areas both endemic and non-endemic for
onchocerciasis to assess the possible interaction of onchocerciasis
and cysticercosis in co-endemic areas. The new study to be conducted
by Winkler, Matuja, and Ovuga should help clarify the situation.

In any case, neurocysticercosis should be considered as a potential
cause of epilepsy throughout sub-Saharan Africa.

References
----------
1. Katabarwa M, Lakwo T, Habumogisha P, Richards F, Eberhard M: Short
report: could neurocysticercosis be the cause of
onchocerciasis-associated epileptic seizures? Am J Trop Med Hyg 2008;
78 (3): 400-1 (full article available at
<http://www.ajtmh.org/cgi/reprint/78/3/400>).
2. Kaiser C, Pion S, Preux PM, Kipp W, Dozie I, Boussinesq M:
Onchocerciasis, Cysticercosis, and Epilepsy. Am J Trop Med Hyg 2008;
79(5): 643-5 (Letter to the editor, full article available at
<http://www.ajtmh.org/cgi/reprint/79/5/643>).
3. Mafojane NA, Appleton CC, Krecek RC, Michael LM, Willingham AL
3rd: The current status of neurocysticercosis in eastern and southern
Africa. Acta Tropica 2003; 87: 25-33 (full article available at
<http://cnia.inta.gov.ar/helminto/A%20Cisticercosis/The%20current%20status%20of%20neurocysticercosis%20in%20Eastern%20and%20Southern%20Africa.pdf>).
4. Waiswa C, Fevre EM, Nsadha Z, Sikasunge CS, Willingham AL 3rd
(2009): Porcine cysticercosis in southeast Uganda: seroprevalence in
Kamuli and Kaliro Districts. Journal of Parasitology Research, 2009,
Article ID 375493, doi:10.1155/2009/375493, 5 pages (full article
available at
<http://www.hindawi.com/journals/jpr/2009/375493.html>).
5. ProMED-mail archive number 20050506.1254
Published 6 May 2005
Subject: PRO/AH/EDR> Cysticercosis - South Africa (Eastern Cape)
6. ProMED-mail archive number 20050521.1407
Published 21 May 2005
Subject: PRO/AH/EDR> Cysticercosis - South Africa (Eastern Cape)(03)

--
A Lee Willingham III, DVM, PhD
WHO/FAO Collaborating Center for Parasitic Zoonoses
Section for Parasitology, Health and Development
Department of Veterinary Pathobiology
Faculty of Life Sciences
University of Copenhagen
Dyrlaegevej 100
1870 Frederiksberg, Denmark
<awi@life.ku.dk>

[ProMED-mail thanks Dr A Lee Willingham for his thorough review of
the situation. We will be happy to post further information. - Mod.EP]

[see also:
Undiagnosed cerebral disease - Uganda: (TG) nodding disease 20090820.2952
2005
----
Cysticercosis - South Africa (Eastern Cape) (03) 20050521.1407
Cysticercosis - South Africa (Eastern Cape) (02) 20050508.1270
Cysticercosis - South Africa (Eastern Cape) 20050506.1254
2003
----
Undiagnosed cerebral disease, children - Sudan (02) 20030925.2423
Undiagnosed cerebral disease, children - Sudan 20030924.2417]
...................................ep/mj/lm

 

[Shiloh]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Source: http://www.monitor.co.ug/artman/publish/news/Deadly_flies_attack_eastern_Uganda_90218.shtml

News | August 25, 2009
Deadly flies attack eastern Uganda

Parliament

The government yesterday announced an attack by a simulium fly, which kills mainly poultry and causes blindness among human beings, in the eastern part of the country.
The announcement was made by the State Minister for Agriculture, Mr Bright Rwamirama, during a plenary session in Parliament.

?The Ministry would like to inform Parliament and the public that in Kamuli and the surrounding districts of Kayunga, Jinja, Kaliro and Iganga, there is an outbreak of simulium fly,? he said.

?The flies move in large swarms attacking and killing poultry by causing loss of blood. They breed in fast-moving water and only adult flies live outside the water,? he added.
The minister said the government has already dispatched a team of entomologists to the affected areas to identify the breeding sites of the fly in order to control it.

To the public, Mr Rwamirama said: ?Keep your poultry indoors and dust your birds with poultry insecticide powder (sevin). Report the presence of the flies to district authorities and assist in identifying breeding sites that can be treated with chemicals to prevent their multiplication.?

He said the black flies are active only during the day and do not breed at night.
Wikipedia, an online encyclopedia, says that the black fly is central to the transmission of the parasitic nematode Onchocerca volvulus, which causes river blindness.

According to Wikipedia, most black flies gain nourishment by feeding on the blood of other animals, although the males feed mainly on nectar. They are usually small, black or gray, with short legs, and antennae. They are a common nuisance for humans.

 

[alert]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Hat-tip Commonground.

http://eafr.promedmail.org/

Published Date
2009-12-17 04:06:15
Subject
PRO/EAFR> Nodding disease - Uganda (03): (Kitgum)
Archive Number
20091217.204292
Full Text
NODDING DISEASE - UGANDA (03): (KITGUM)
****************************************



Date: Tue 15 Dec 2009
Source: Chinaview.cn, Xinhua [edited]
http://news.xinhuanet.com/english/2009-12/16/content_12653187.htm

Health experts are investigating an outbreak of a strange disease in
northern Uganda which makes children nod their heads, a senior health
official said here on Tuesday [15 Dec 2009].

Issa Makumbi, the head of disease surveillance in the Health Ministry
told Xinhua in an interview that the health teams that were sent to
the northern districts of Kitgum and Pader are expected to conclude
their investigations this week [week ending 20 Dec 2009] and release
the results next week on the possible cause of the disease.

"We have now tried to do extended investigations where we have called
in more experts to go and look at that disease in more detail," he
said. "We know that it affects the brain, the muscles, and it affects
the whole of the body, so that the child does not grow properly," he
added. The disease, locally referred to as Nodding Disease, attacks
children between the ages of 5 to 16.

Makumbi said some parents have started abandoning their children who
have fallen victims of the disease. "We have established a community
counseling program there to tell the parents that this disease can be
controlled; they should not lose hope," he said. The disease that was
first reported in June this year [2009] has so far affected at least
300 children, according to reports.

William Mbabazi, an official in charge of disease surveillance and
response at the World Health Organization office here, told the
state-owned New Vision daily last week that Uganda was the 4th
country to be struck by the strange disease after Sudan, the
Democratic Republic of Congo, and Tanzania.

[Byline: Anne Tang]

--
Communicated by:
ProMED-EAFR

[Kitgum district is one of the districts in Uganda where community
directed mass treatment with ivermectin is being implemented since
March this year (2009), following a rapid epidemiological assessment
that revealed high prevalence of onchocerciasis. The nodding disease
syndrome, characterized by an epileptic like disorder ("nodding"),
malnutrition and stunting, has been reported in the same district. A
positive correlation between onchocerciasis and epilepsy has been
demonstrated in other areas that are endemic for onchocerciasis in
West, Central, and East Africa, but to date, it is not known whether
this correlation constitutes a causal relationship. Hopefully, this
in-depth investigation will help in establishing the aetiology of
epilepsy in this onchocerciasis endemic district, whether
cysticercosis has a role in the epileptic disorder, and the possible
interaction between onchocerciasis and cysticercosis.

Kitgum district in northern Uganda can be located on the
HealthMap/ProMED-mail interactive map at
http://healthmap.org/r/00Hu. - Mod.JFW]


See Also

Nodding Disease - Uganda: (Kitgum) 20090819.201333
Nodding disease - Uganda (02): (Kitgum) comment 20090827.201488

For additional background information on the undiagnosed cerebral
disease and cysticercosis available from the general ProMED-mail
list, the postings below can be found at 20090820.2952
2005
----
Cysticercosis - South Africa (Eastern Cape) (03) 20050521.1407
Cysticercosis - South Africa (Eastern Cape) (02) 20050508.1270
Cysticercosis - South Africa (Eastern Cape) 20050506.1254
2003
----
Undiagnosed cerebral disease, children - Sudan (02) 20030925.2423
Undiagnosed cerebral disease, children - Sudan 20030924.2417]
...................................jfw/msp/be

 

[Commonground]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Thứ Tư, 16/12/2009, 22:07
300 children Uganda strange disease

(ANTD) - Uganda Ministry of Health said, at least 300 children were infected northern countries have a strange disease with unexplained symptoms nodded repeatedly.


Children of northern Uganda is facing a strange disease


Mr. Issa Makumbi, head of disease control agency under the Ministry of Health for Uganda, Uganda is the 4th to the Sudan, Congo and Tanzania appears this strange disease, but so far still unknown cause of it.

"Patients nodded" in the name of the local people only attack children from 5-16 years old, not only may affect the brain and organizations, but also affects the development of normal physiological young. In some localities, covering anxiety in the population, people even throw away the child's illness as superstitious. Currently the expert team was sent to the provinces is as Kidepo and Pader to investigate the causes and likely results will be announced in the next few days.

http://translate.googleusercontent....le.com&usg=ALkJrhjC_9iRcXeTPl4r3LmyCwI0-zQOpA

 

[alert]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Currently the expert team was sent to the provinces is as Kidepo and Pader to investigate the causes and likely results will be announced in the next few days.

http://translate.googleusercontent....le.com&usg=ALkJrhjC_9iRcXeTPl4r3LmyCwI0-zQOpA

That's very optimistic. This problem has been going on for years. I'd be shocked if results come out in the next few days.

 

[Emily]

Sudan, Uganda and Tanzania: Mysterious 'nodding' disease strikes children

Sudan, Uganda and Tanzania: Mysterious 'nodding' disease strikes children

http://health.asiaone.com/Health/News/Story/A1Story20111010-304244.html

Monday, Oct 10, 2011
AsiaOne
[snip]
Named after its primary symptom of pathological nodding, it has a peculiar set of symptoms, reportedly affecting only children below 15 years of age.

The seizures are triggered by the food and low temperatures, but is strangely not present when victims are given unfamiliar food, said a World Health Organization (WHO) report.

The seizures stop once the child stops eating or feels warm again...

 

[Emily]

Re: Sudan, Uganda and Tanzania: Mysterious 'nodding' disease strikes children

Re: Sudan, Uganda and Tanzania: Mysterious 'nodding' disease strikes children

http://www.southsudanmedicaljournal.com/archive/february-2011/investigation-into-the-nodding-syndrome-in-witto-payam-western-equatoria-state-in-2010.html

Southern Sudan Medical Journal
Investigation into the Nodding syndrome in Witto Payam, Western Equatoria State in 2010
Author(s): John Lagu Nyungura MBBS, MSc. Applied Epidemiology(a); Thomas Akim MBBS(b); Anthony Lako MBBS, DPH(c); Abe Gordon BSc, MSc Applied Epidemiology(d); Lily Lejeng MBBS(e) and Gibson William(f)

Transcript for CDC Responds to Nodding Disease in Uganda
<object width="560" height="315"><param name="movie" value="http://www.youtube.com/v/LwOUzE03xm0?version=3&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/LwOUzE03xm0?version=3&hl=en_US" type="application/x-shockwave-flash" width="560" height="315" allowscriptaccess="always" allowfullscreen="true"></embed></object>

 

[alert]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

http://www.promedmail.org/

Published Date: 2011-12-15 20:26:18
Subject: PRO/EDR> Undiagnosed cerebral disease - Uganda: (PD) nodding disease
Archive Number: 20111215.3605

UNDIAGNOSED CEREBRAL DISEASE - UGANDA: (PADER) NODDING DISEASE
**************************************************************

A ProMED-mail post
http://www.promedmail.org
ProMED-mail is a program of the
International Society for Infectious Diseases
http://www.isid.org

Date: Thu 15 Dec 2011 Source: All Africa [edited]http://allafrica.com/stories/201112080449.html


Uganda: Nodding Disease Death Toll in Pader At 66
-------------------------------------------------
As health experts remain puzzled about the mode of controlling the
spread of the nodding disease that has been devastating Pader
District, at least 66 children have been reported dead, leaving about
1500 others out of school in just 6 months.

A report by Trans-Cultural Psychosocial Organisation, an
non-governmental organization (NGO), reported that at least 1800 new
cases of the disease are reported after every 3 months, putting lives
of more children in the district at risk.

Nodding disease is a peculiar health problem that was 1st reported in
the district in 2008 and is characterised by head nodding, mental
retardation, stunted growth, blindness, body stiffness, endless
running nose and saliva, occasional defecation and urination during
attack of the infected person.

Many of the affected children are malnourished because eating food
seems to spark bouts of nodding and sometimes seizures. Epilepsy drugs
have been used to control the attacks but they do not cure the
disease, which has left many people perplexed, including medical
officers.

A 48-year-old woman of Atanga Sub-county, who has so far lost 2
children to the disease, said she fears that her only remaining
11-year-old child, who is also infected, could die soon.

Pader District Health Officer Janet Oola on Tuesday said the spread of
the disease is a great concern because it spreads so fast that about
1400 to 1600 infections were registered per day since August. [This is difficult to believe, and contradicts an earlier count in this same article. - alert]

"The disease is so intense especially among children aged between 3-18
years and has spread to at least all sub-counties," Dr Oola said,
adding that despite using preventive drugs to treat the disease, more
infections continue to emerge.

According to Dr Oola, the disease has no known drugs but medicines
like Phenobarbitoin and Carbamaxpine that are used to treat its signs
and symptoms are expensive for the district to adequately supply to
the affected persons. She also noted that the disease can be prevented
by observing hygiene.

Pader LC5 Chairman Alfred Akena, however, said the district is in the
process of developing a paper that will help reduce the prevalence of
the disease. "We have called for regional meetings with all the
leaders in the region because the disease is a regional threat that
needs joint effort to kick it out."

The nodding disease is said to have 1st emerged in Sudan in the 1980s
and is currently restricted to small regions in South Sudan, Tanzania
and Uganda

--
Communicated by:
Mary Marshall


[In 1962, several children with attacks of "nodding head" were
described in Mahenge, a village of southern Tanzania (Aall L. Epilepsy
in Tanganyika. Transcult Res Mental Hlth Prob 1962;13:54-7). Possible
causes have remained obscure, but over 40 percent of those with HN
seemed to have cognitive impairment (Winkler AS et al. Clinical
characteristics of people with head nodding in southern Tanzania. Trop
Doct. 2010;40:173-5).

Nodding Disease has been linked to onchocerciasis (Kipp W et al.
(1994) Onchocerciasis and epilepsy in Uganda. Lancet 1994;343:183-4;
and Kipp W et al. Improvement in seizures after ivermectin. Lancet
1992;340:789-790). However, a review of available studies concluded
that there was no solid evidence linking epilepsia to onchocerciasis
(Druet-Cabanac M et al. Review of epidemiological studies searching
for a relationship between onchocerciasis and epilepsy.
Neuroepidemiology. 2004;23:144-9).

A study which includes MRI results on 7 patients with Nodding Disease
(Head Nodding Syndrome) reported that 4 had a normal scan. Of the
rest, one had frontal release signs and the other three patients
showed hippocampus pathologies were seen (2 bilateral). In 2 patients,
there were additional gliotic lesions. Another study using
computerized tomography found evidence of neurocysticercosis as a
major course of epilepsia in a rural area of Tanzania (Winkler AS et
al. Epilepsy and neurocysticercosis in rural Tanzania-An imaging
study. Epilepsia. 2009;50:987-93).

Thus the disease remains elusive. However, looking at the present
outbreak both neurocysticercosis and onchocerciasis seems unlikely.
Both of these infections have long incubation periods and the parasite
burden slowly builds up and this does not fit with the present rapid
spreading outbreak.

An infectious disease seems unlikely. Rather a food borne illness for
instance caused by a toxin would present. Several toxins produce
encephalopathies in which myoclonus can be a prominent feature. These
include intoxications with bismuth, methyl bromide, cooking oil
containing anilines, and tetraethyl lead. The clinical features in
many cases resemble the action myoclonus syndrome of posthypoxic
encephalopathy (Obeso JA et al. Toxic myoclonus. Adv Neurol.
1986;43:225-30), and the Spanish Oil Syndrome also come into mind
(Fournier E et al. Spanish adulterated oil matter. An important
discovery by Spanish toxicologists: the toxicity of anilides of
unsaturated fatty acids. Toxicol Eur Res. 1982;4:107-12).

ProMED will be happy to post data on the patients line cerebral scans,
results of lumbar puncture and we hope the authorities will perform a
detailed case control investigation of relevant factors like food and
environmental exposures. HealthMap location:
http://healthmap.org/r/1xMp - Mod.EP]

 

[Shiloh]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Source: http://www.newscientist.com/article...odding-syndrome-spreading-through-uganda.html

Mysterious nodding syndrome spreading through Uganda

* 10:30 23 December 2011 by Curtis Abraham, Uganda

Large areas of northern Uganda are experiencing an outbreak of nodding syndrome, a mysterious disease that causes young children and adolescents to nod violently when they eat food. The disease, which may be an unusual form of epilepsy, could be linked to the parasitic worm responsible for river blindness, a condition that affects some 18 million people, most of them in Africa...

 

[Ronan Kelly]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Mysterious disease kills 100 people in northern Uganda, leaves scientists perturbed

English.news.cn 2012-01-08 06:13:17

KITGUM, Uganda, Jan. 7 (Xinhua) -- Scientists are to launch a series of other investigations after previous ones failed to identify the cause of a mysterious disease that has killed over 100 people and left over 2,000 others infected in several districts in northern Uganda.
...

Richard Nduhura, minister of state for health in charge of general duties, said that the two previous samples and tests carried out by Centers for Disease Control (CDC) scientists in Atlanta U.S. failed to identify the cause of the disease.

Nduhura, who is leading a fact finding mission in the affected areas which are also recovering from a two decade long insurgency, told the residents on Friday that a team of scientists from the ministry of health, World Health Organization and CDC is going to carry out new tests.
...
http://news.xinhuanet.com/english/world/2012-01/08/c_122551848.htm

 

[Emily]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

http://www.newvision.co.ug/news/315127-acholi-mps-demand-centres-for-nodding-disease.html

Acholi MPs demand centres for nodding disease
Publish Date: Dec 28, 2011
[snip]
Achieng who recently had a meeting with legislators from the affected region said the ministry of health had ferried a few affected children to Mulago hospital for treatment but according to the MPs all affected children should be rehabilitated there or all be brought to Mulago hospital for special treatment.

?We want rehabilitation centers for these children, last year 8 children were brought to Mulago for treatment and they recovered the same should be done on these affected children, said John Okot (Agago county)...

 

[alert]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

http://www.promedmail.org/

Published Date: 2012-01-15 16:37:45
Subject: PRO/EDR> Undiagnosed cerebral disease - Uganda : (Acholi) nodding disease
Archive Number: 20120115.1011277

UNDIAGNOSED CEREBRAL DISEASE - UGANDA : (ACHOLI) NODDING DISEASE
****************************************************************
A ProMED-mail post
http://www.promedmail.org
ProMED-mail is a program of the
International Society for Infectious Diseases
http://www.isid.org

Date: Sun, 15 Jan 2012
Source: http: //www.monitor.co.ug/SpecialReports/-/688342/1305064/-/vtd6et/-/

Nodding disease, Uganda, Acholi 1800 deaths and another 1000 affected
Acholi Sub-region desperate as children nod to their death. Constant flow of saliva is one of the symptoms of nodding disease.

Parents, govt and medical practitioners are at a loss over the nodding
disease whose cause and mode of spread is unknown. All parties are watching
helplessly

It might seem like an amusement ailment, but the victims can violently nod
to death. Nodding is the notable symptom of the mysterious, little-known
nodding disease that is threatening to wipe out the children in Acholi
sub-region. It has so far killed about 1,800 children and more than 1,000
children are suffering from it.

The condition, named after its major symptom has left many parents
speechless and desperate with the government lost for what action to take to
curb the situation since its cause and mode of spread is unknown. When the
first cases of the disease were reported in 2003, some locals thought it was
witchcraft. They visited witch doctors, but nothing changed.

Others thought it was a curse from God, so they chose prayers but still,
nothing changed. Others believed in scientific medicine but lost hope along
the way, saying the white man's drug had failed them. No single child has
been cured since 2003. At least 1,270 cases of children between two and 15
years old have since then been registered in Kitgum, Lamwo, and Pader
districts and two cases registered in Gulu District last week.

The disease, which has remained a puzzle to many medical experts, is
characterised by mental and physical retardation, head nodding and drooling,
constant nasal flow and saliva. The victims often nod themselves to death.
Many of the affected children are malnourished because eating food seems to
spark bouts of nodding and seizures. Epilepsy drugs have been used to
control the attacks but they do not cure the disease.

The Centers for Disease Control (CDC), the American organisation that was
tasked to study samples from some of the nodding syndrome victims, disclosed
that results of the 2009 samples were given to the Ministry of Health in
August 2010.

However researchers were not able to find the cause of the ailment that has
spread across the six districts in Acholi Sub-region. According to the CDC
Lab Director, Mr Robert Dowing, the results which were given to the Ministry
of Health offered no clear guidance on what was causing the disease but two
symptoms stood out; river blindness and nutritional problems.

This enhanced the theory that the disease is connected to a parasitic worm, Onchocerca volvulus, which is carried by a black fly and also causes river blindness.

Dr Dowing, however, said results of the second samples taken to Atlanta are
expected in two weeks' time. Dr Jane Achieng, the director general of health
services, said the Health Ministry delayed to release the results to the
public because they were inconclusive and did not show the cause of the
disease. "We could not report the results yet because they were partial and
that's why we sent more samples to Atlanta," she said during a meeting with
Acholi Parliamentary Group in Kitgum District recently.

Results from the MRI scans done at Mulago Hospital on some of the affected
children have shown abnormal brain waves [MR scan provide an image not wawes] but it does not get to the root of the problem.

The syndrome is common in areas around Pager River Belt in Kitgum, where the
LRA and government soldiers rocked their guns and missiles, leaving some
locals to say the disease could be yet another effect of the war.

Several other theories have been advanced as to what could be the possible
cause of the disease, among which is relief food and post war effects,
contaminated water, and poisoned game meat.

To try and confirm these theories, Gulu University, based in the region, is
set to institute an in-depth research into the mode of spread, control and
treatment of the nodding disease that continues to ravage the sub-region
unabated.

According to Prof. Emilio Ovuga, the dean of the Faculty of Medicine at the
university, the area of focus during the research will be the effects of
heavy artillery used during the LRA insurgency and the increased tsetse fly
infestation in the affected districts.

Although the intended research is a positive move, it could take months
before a proper diagnosis of the ailment is got. The research centre is
expected to open between March and May. Against this background, the Acholi
and councillors have demanded that government puts in place rehabilitation
centres to manage the symptoms as experts try to find answers to the
battling question.

They have also proposed responses such as; household assessment to determine
the actual number of people and families affected; a comprehensive research
centre in the sub-region; psycho-social support; constant medical supplies;
infrastructure like a hospital and special needs school and mobile units to
offer easy accessibility.

Most children suffering from nodding disease cannot walk long distances, and
the nearest health facility is about 12 kilometres away from the villages.
Other people opt to haul their children on wheelbarrows to the health
centres, which they say is very tiring and discouraging.

"Even after you have gone through this labour and walked a very long
distance hoping to get some medicine, you reach the hospital and find when
they have no medicine," said Ms Jackline Lakot, a mother of two affected
children. Though it is estimated that about 1,800 children have died of the
ailment, the only official figures are from Pader (88) and Kitgum (45).

Recently five children from Okidi Village drowned in a stream when the
disease attacked them. The disease has left many homes broken with some men
abandoning their wives, accusing them of witchcraft. Others have driven
their wives and children out of their homes.

Ms Betty Olana has eleven children, five of whom have the nodding syndrome.
One contracted it in 2003, and the other four were infected the following
year. "My husband ran away from home, now I have 11 children to look after.
When the five are under attack, I need someone to hold them. I can't do any
work because I have to keep on the lookout on who will get seizures next,"
she laments.

Efforts to alleviate poverty by residents who have just returned home after
years in camps, have also failed because parents of the infected children
find it difficult to work. Most of the time is spent making long trips to health centres and looking out for the children so that they do not fall into fire or water. "Life has become unbearable for me. I can't eat when my children are looking on because every time they see food, they start nodding or get seizures," says Ms Janet Akol. She adds: "I have to use ropes to tie them on a tree so that I run a few errands like fetching water or getting their medicine from the hospital."

More than 1,000 children in the Acholi Sub-region are reported to have
dropped out of school as a result of the disease which affects levels of
concentration. Jennifer Arach and Patrick Kidega both said they dropped out of school at Primary Five in 2006. According to Mr Michael Otto, a psycho-social officer with Transcultural Psycho Social Organisation Uganda, an NGO, the epilepsy drug that is being used to manage the nodding symptoms has stopped working for some of the victims.

"Some react to the drug," Mr Otto says. "There are those who get wounds in
their mouth, and some peel off their skin, complicating the problem further."
At Okidi Primary School, about 300 sick pupils have dropped out of school
since 2008 because of the stigma. Most of the pupils in the school do not
want to associate with the "sick." And because of the stigma and failure to
concentrate in class, most of them have opted out.
The problem escalates at
lunch break when food is served. Many with the syndrome, get seizures, which
takes them between one to three hours to regain consciousness.

Parents are thus appealing to government to set up a school for special
needs where the victims can be catered to. A report by Trans-Cultural
Psychosocial Organisation, an NGO, indicates that at least 1,800 new cases
of the disease are reported after every three months.

State Minister for Health (general duties) Richard Nduhura last week
appealed to the families affected to stay calm as government tries to find a
cure, and the cause. "We cannot effectively manage the disease because we don't know what causes it but we can manage symptoms as we try to find the cause. This is not the time for apportioning blame. Working together will save the future of Acholi sub-region," the minister said.

But despite government's promise to put in place immediate interventions to manage the disease, the long-suffering victims of the ailment are losing hope and lives.

By the end of December last year, government announced plans to set up
centres where the affected children would be getting help in form of pain
killers to manage the symptoms, dispatch a team of experts to the affected
areas, and an information centre. However, to date, nothing has been done. Health facilities ran short of the epilepsy drugs they have been using to control the disease, leaving the sick in despair.

Even with threats from Acholi MPs to ferry the sick to Kampala in protest,
nothing tangible has been done by government. With Parliament on recess
until early February, victims of the disease will have to wait longer for
any help from government as the matter is not being given the urgency it
deserves.

[Byline:
Agatha Ayebazibwe]



[ProMED reviewed the literature in our posting from December 15th, 2011 and draw a parallel to the Spanish Oil Syndrome (Fournier E et al. Toxicol Eur Res. 1982;4:107-12). Nodding disease is not new and the first cases were reported in the literature in 1962.
We still think that a toxic encephalopathy causing myoclonia is the best guess. The present report cites sources close to the investigation for saying that the tests are inconclusive. This indicates that a common infectious agent is unlikely.
A case-control study looking into food and drink by affected children and controls is badly needed.ProMED will be happy to post any further information.
- Mod. EP

 

[Pathfinder]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Pader runs out of drugs for controlling nodding

By Jacky Adure (email the author)
Posted Tuesday, January 17 2012 at 00:00

Parents in Pader District have to dig deeper into their pockets to get medicine for controlling nodding disease among their children. The district two weeks ago ran out of epilepsy drugs (Phenobarbitoin and Carbamaxpine) which are used to control the nodding disease. The areas where the disease is most severe are Atanga, Lapul, Angagura, Awere and Puranga sub-counties.

<!--Ads and Related Buttons--><!-- Ads minus related Buttons -->
Ms Ventorino Aol of Lacekocot, whose two grandchildren are battling the disease, had to seek medication at Gulu Hospital, about 45 kilometers away. Transport from Pader to Gulu is about Shs15,000. The district has been largely dependant on the Transcultural Psychosocial Organisation, an NGO, that has been providing treatment for managing the disease since its outbreak three years ago.
...
The district chairman, Mr Alfred Akena, in an interview with Daily Monitor on Sunday, said they are overwhelmed by the disease because parents can no longer concentrate on income generating activities as they have to attend to their sick children. ?We have fears that the coming months would not be good for the people because almost every family here is affected by the disease,? Mr Akena said.

Full text:
http://www.monitor.co.ug/News/National/-/688334/1308454/-/b1y324z/-/index.html

 

[Pathfinder]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Government on the spot over nodding disease

By Agatha Ayebazibwe (email the author)
Posted Friday, January 20 2012 at 00:00

The escalation of the nodding disease syndrome in northern Uganda could have been avoided if government had implemented research recommendations availed to it in 2009 by health experts, Daily Monitor has learnt.
...
The government was for instance required, more than three years ago, to build the capacity of the health systems in the affected areas, especially by training health workers to detect, manage and report head nodding disease cases and determine an accurate case counts against which care and treatment would be planned.

<!--Ads and Related Buttons--><!-- Ads minus related Buttons -->
Other recommendations included securing specialised care and treatment centres for the nodding disease in the affected counties and to determine the best or combination treatment options to control the head nodding episodes.

<!--Ads and Related Buttons--><!-- Ads minus related Buttons -->
The government was also expected to obtain more in-depth understanding of the disease and the possible causes, ensuring availability of medicines and supplies needed for care and the treatment of head nodding symptom.
...
To-date, no concrete effort has been made by government to implement the recommendations. Unfortunately, hundreds of lives have already been lost, and hundreds of other victims and their families have been subjected to devastating levels of pain and distress, while government still appears uncertain and contradictory in its response to the disease outbreak.<!--Ads and Related Buttons--><!-- Ads minus related Buttons -->

According to the study, by December 2009, more than 152 families in 39 villages registered signs and symptoms of head nodding. However, 75 per cent of the verified cases were from 12 villages; Tumango 40, Okidi Central 20, Abamu 19, Anyuka 14, Laraba 13, Awere 11, Beyogoya 10, Pawena Camp and Labworomoro 6, and Adye, Alima and Anaka villages with 5 cases, respectively, all in Kitgum District.

<!--Ads and Related Buttons--><!-- Ads minus related Buttons -->The numbers have since increased from 190 cases verified then to more than 1,000 in Kitgum. According to Dr William Mbabazi, who was part of the team at the time of the research, the cases of the disease would have been significantly minimised if the ministry had implemented their recommendations.

<!--Ads and Related Buttons--><!-- Ads minus related Buttons -->?The Ministry of Health leadership prioritised the quest for head nodding disease causation and therefore negated all the recommendations in favour of research led by CDC, which would have otherwise controlled the spread of the disease,? Dr Mbabazi said.
...

Full text:
http://www.monitor.co.ug/News/National/-/688334/1310634/-/b1i271z/-/index.html

 

[alert]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Sounds like a possible solution...

http://www.promedmail.org/

Published Date: 2012-01-23 20:17:51
Subject: PRO> Undiagnosed cerebral disease - Uganda (02): nodding disease
Archive Number: 20120123.1019479

UNDIAGNOSED CEREBRAL DISEASE - UGANDA (02): NODDING DISEASE, COMMENT
********************************************************************
A ProMED-mail post
http://www.promedmail.org
ProMED-mail is a program of the
International Society for Infectious Diseases
http://www.isid.org

Date: Mon 23 Jan 2012
From: Andre Burnens [edited]


Among all toxins able to produce a toxic encephalopthy, mycotoxins appear a distinct possibility for several reasons. I teach vet students about mycotoxins in animal feed, and key points I emphasize in my lectures are:

- The central nervous system is among the key organs often involved in mycotoxicosis.
- The disease symptoms are often novel and unlike known intoxications.
- There are no secondary cases, thus excluding transmissible disease agents.

Disease is usually acquired by consumption of food containing mycotoxins.

The "incubation period" will depend on the type of toxin and can be prolonged. I hypothesized that some food which has been distributed for disaster relief may have spoiled under the adverse conditions in the affected region (or due to poor preparation practices for food items unfamiliar among the affected population). This may explain the limited age range of ill persons, which is a striking feature of the outbreak.--
Andre Burnens, MD
Institute for Veterinary Bacteriology
University of Bern
3012 Bern, Switzerland


[ProMED thanks Andre Burnens for his comment.

If the outbreak was caused by a mycotoxin, it would fit with the epidemiology of the outbreak as we know it. This could also explain why it has appeared in smaller or larger outbreaks over the years since it was 1st described in 1962. ProMED will be happy to post further information. - Mod.EP

 

[Pathfinder]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Could mysterious nodding disease in Africa have global implications?

Published On Sat Jan 28 2012
Debra Black Staff Reporter
...

Causes and treatments?

Researchers had hypothesized it might be caused by a new viral encephalitis, but that didn?t bear any fruit. They also thought perhaps it was a prion disease ? such as Creutzfeldt-Jakob disease ? but they have ruled that out, as well.

Now scientists are betting on the possibility that nodding syndrome is associated with river blindness. In all three CDC investigations so far, said Dowell, researchers have found an association.

Children and adolescents with the disease are more likely to have antibodies against river blindness and were more likely to be exposed to it. But scientists don?t know how river blindness transforms itself into nodding syndrome.

None of the children or adolescents who suffer from nodding syndrome recover. ?Once they have it, it is forever,? said Dowell. It is very debilitating ? they can?t eat, they are malnourished and they have cognitive problems, so they drop out of school and become totally dependent on their parents and the community, Dowell said.

Currently, sufferers are being treated with anti-epileptic medications and family members report the children are experiencing some relief.

The CDC has also recommended that they be treated for river blindness and malnutrition.

Global Significance

?Because we don?t know what causes it or its transmission routes, we don?t know what implications it may have for the rest of the world,? said Dowell.

Some diseases in Africa are local and others turn out to be globally important. He cites as an example ?slim disease? ? a wasting disease in West Africa. ?It turned out to have been caused by HIV before HIV was discovered.?

In the case of nodding syndrome ?we don?t know the implications of this for the rest of the world,? Dowell said. ?It?s quite clear it has huge implications for those living in Kitgum district in Uganda, but it could turn out to have just as huge implications for the rest of the world.?

Full text:
http://www.thestar.com/news/article...sease-in-africa-have-global-implications?bn=1

 

[Shiloh]

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Re: UGANDA: Nodding disease or "river epilepsy"? Hundreds of children infected

Source: http://www.thestar.com/news/article...sease-in-africa-have-global-implications?bn=1

Could mysterious nodding disease in Africa have global implications?
Published On Sat Jan 28 2012
Debra Black Staff Reporter

Nodding syndrome ? a disease with epileptic-type symptoms prevalent in parts of northern Uganda ? is a medical mystery that is confounding medical researchers and scientists alike.

The disease causes young children and adolescents to nod violently in an apparent seizure. It happens frequently throughout the day, including when they eat.

Over the past year there has been a growing outbreak in northern Uganda, specifically in Kitgum, Pader and Gulu. It is believed that thousands of cases have developed, but officials from the U.S.-based Centers for Disease Control (CDC) have only been able to confirm a couple hundred.

A team from the Atlanta-based health organization is returning to Uganda in February to consult with local officials about a treatment trial...