Nodding Disease and Swine Fever (Second Edition)

Nodding Disease and
African Swine Fever
Virus in Uganda

Cause or Coincidence?

Produced by http://noddingdisease.blogspot.com/

1
Nodding Disease and African Swine Fever Virus in Uganda: cause or coincidence?

In the north of Uganda, thousands of
children have fallen ill with a fatal,
incurable disease known as nodding
disease. Communities are starting to
panic and some people are losing
hope as the medical community
struggles to either find a cause or a
cure, as the BBC's Will Ross reports.

http://www.bbc.co.uk/news/world-africa-17589445

2

New Video says
Nodding Disease is
"Spreading Quickly"

http://youtu.be/vKdS8OG_EOk

3

Scientific American: Thousands are dying of Nodding Disease each year

Nodding Disease Origins Remain
Unexplained
By Katherine Harmon

A strange illness [Nodding Disease] has been killing thousands
of young people each year, and recently it has started claiming
even more victims in Africa.
http://blogs.scientificamerican.com/observations/2012/04/12/nodding-disease-origins-remain-
unexplained/

4

Nodding disease takes toll on
Kitgumschool
In Okidi Primary School, the condition has taken its toll as
the majority of the learners are infected with the syndrome
making learning difficult for them.

“At the moment, we have 215 pupils out of the 365 enrolled in
the school. They are struggling to learn with the disease,
thwarting their learning processes by continuous nodding
and constant seizures even during lesions,” she said, adding
that the pupils are evidently disinterested in learning.

MsAtto said it’s a normal scenario to see every after one hour,
a pupil convulsing, keeping the other children in distressful
mood thinking that they could be next.
By Stephen Komakech, Saturday Monitor
http://www.monitor.co.ug/News/National/-/688334/1334206/-/b07ac5z/-/

5

A quarter of the children in some
Ugandan villages are afflicted with
Nodding Disease
Ugandans hope Kony spotlight shifts to more urgent
problem: „Nodding disease‟
By Geoffrey York

Ugandan journalists and activists have been trying to gain attention for nodding disease, and
this week they finally won a major victory: special clinics were opened in several districts of
northern Uganda to offer help to the victims. More than 200 sick children were brought to the
clinics on Monday alone.
At medical clinics, the children are sometimes treated with anti-convulsants and epilepsy drugs
to reduce their symptoms. But no cure has been found. In some villages, up to a quarter of the
children are afflicted by it, and a climate of fear is growing, although the disease itself does not
appear to be infectious.

http://www.theglobeandmail.com/news/world/worldview/ugandans-hope-kony-spotlight-shifts-
to-more-urgent-problem-nodding-disease/article2367713/

6

Mother: “I watched
three of my children
nod to death.”
By Harriet Anena
http://www.monitor.co.ug/Magazines/Life/-/689856/1377046/-/item/0/-/i9e4hrz/-/index.html

7

9 children in one
Ugandan family have
Nodding Disease
http://youtu.be/wOuDEYd1aZs

8

Uganda is accused of covering up the
real number of Nodding Disease
deaths
[Ugandan] Govt urged to declare north a
disaster zone
Written by Ahmed BogereMasembe
http://ssuubifm.net/kay/2012/03/govt-urged-to-declare-north-a-disaster-zone/

Ugandans living in the United Kingdom (UK) have demanded that the government declares
northern Uganda a disaster zone because of the nodding disease that is ravaging most
parts of the region.

The activists made the call on Saturday 3, March as they launched a campaign to solicit
funds to set-up a research centre, raise awareness, and highlight the dangers of a „nodding
disease‟ which has affected thousands of children aged between 5 and 15 years in northern
Uganda.

Ms Belinda Atim, who spearheaded the initiative in conjunction with Lee Oryem and the
Acholi community in the UK said they decided to take action because of the situation in
northern Uganda. “We feel that the government‟s response is lukewarm and they could do
more because it is in charge of the people. We know that they are hearing.” MsAtim said.
She added: “We know that some money has been committed by the government but that
money is not enough. 100million Uganda Shilling only equates to about £23,000 or £25,000.
It can‟t take care of the 3000 children officially known be suffering from the disease.”
She also said much as the media may say or put the death figure at less than 200,
“…we know one village which has lost 264 children,” said MsAtim, before adding
that: “In other villages the death rate is higher, we know between 1800 and 2000
children have died. We feel that the government should have declared northern
region a disaster zone.”

9

What is Uganda covering up?

Police arrest man
fundraising for
nodding disease
patients
By Agatha Ayebazibwe

“The syndrome has come to light, government should stop hiding it from
the public but rather take a bold step to address it,” said Ms Sandra
Komuhiindo, the communication and information assistant at Uganda
Women’s Network, one of the organisations running the campaign.
The arrest seemed to have been uncalled for, as police chief Kale
Kayihura ordered the release of MrMwanika and apologised for the
incident. Charges were dropped but the pictures and other material
remains in police custody, while the band has been prohibited from
mentioning nodding disease during their show.
http://www.monitor.co.ug/News/National/-/688334/1377320/-/awo0ybz/-/

10

Doctor in Uganda says
Nodding Disease could
be from contact with
some animal
http://youtu.be/_atd3ptpZKc

11

Is it possible that "nodding disease" is coming from carrier pigs
infected with a new chronic or subacute strain of African
Swine Fever Virus? African Swine Fever has been a serious
problem in Uganda. Scientists often quickly dismiss the notion
of a human epidemic of African Swine Fever Virus because they
think African Swine Fever Virus does not infect people. But that
may not be the case. Sick or ASFV-infected pigs in places like
Gulu, Anaka, Arua, Kitgum, Masindi, and Pader may be the
source of a "nodding disease" zoonotic virus. Even if the pigs
are not overtly sick, they could be carriers of a strain of this
very insidious virus. African Swine Fever Virus infects many
parts of the pig's body, including the brain. It causes serious
neurological damage. It is also interesting that in some
epidemics of African Swine Fever, it is mainly the young piglets
that are affectedwhich would be a strong parallel to "nodding
disease." The ASFV-infected piglets suffer from ataxia, wasting,
stunted growth, blindness, increased salivation, and
opportunistic infections, just like the children with Nodding
Disease.

12

Background on African Swine Fever
Virus as a human pathogen:
"African Swine fever is an endemic disease in sub-Saharan Africa and
many other parts of the developing world. It is caused by the African
Swine virus that primarily replicates in macrophages and monocytes
leading to the impairment of the structure and function of the immune
system of the infected organisms. Until now the African Swine epidemic
continues to spread despite all efforts to contain it. Thus, there is an
objective need for effective, safe and affordable preventive and
therapeutic approaches, in particular for effective vaccines, to control
and eventually eradicate this disease. Since the characteristic feature of
the African Swine virus is to impair the immune system and to cause
immune deficiencies in its hosts the development of vaccines and other
therapeutic approaches against the African Swine virus has implications
for other immune deficiencies or diseases. Several other viruses are also
known to cause immunodeficiency-like syndromes in humans, including
cytomegalovirus, Epstein Barr Virus and others. Moreover, a series of
cases of so-called "idiopathic" immunodeficiencies have been
documented that display CD4+T-lymphocytopenia with opportunistic
infections, but show no evidence of HIV infection. Since antibodies for
the African Swine virus have been detected in humans, the possibility of
human infection with the African Swine virus exists and may thus far
have escaped any systematic screening. Thus, any preventive and
therapeutic approach to African Swine fever can have far-reaching
implications to control immune deficiency conditions in humans."
http://www.faqs.org/patents/app/20080207875

13

Detection of Novel Sequences Related
to African Swine Fever Virus in
Human Serum and Sewage.
Loh J, Zhao G, Presti RM, Holtz LR, Finkbeiner SR, Droit L, Villasana
Z, Todd C, Pipas JM, Calgua B, Girones R, Wang D, Virgin HW.

Departments of Pathology & Immunology and Molecular Microbiology,
Department of Medicine and Department of Pediatrics, Washington
University School of Medicine, St. Louis, Missouri; Department of
Biological Sciences, University of Pittsburgh, Pittsburgh, Pennsylvania;
Department of Microbiology, Faculty of Biology, University of
Barcelona, Barcelona, Spain.

"The family Asfarviridae contains only a single virus species, African
swine fever virus (ASFV). ASFV is a viral agent with significant
economic impact due to its devastating effects on populations of
domesticated pigs during outbreaks, but has not been reported to infect
humans. We report here the discovery of novel viral sequences in human
serum and sewage which are clearly related to the Asfarvirus family, but
highly divergent from ASFV. Detection of these sequences suggests that
greater genetic diversity may exist among Asfarviruses than previously
thought, and raises the possibility that human infection by Asfarviruses
may occur."
http://www.ncbi.nlm.nih.gov/pubmed/19812170?dopt=Abstract

14

African Swine Fever Virus (Asfarviridae)
sequences found in people with febrile
illnesses
Abstract
Virus Identification in Unknown Tropical Febrile Illness
Cases Using Deep Sequencing
Dengue virus is an emerging infectious agent that infects an estimated 50–100
million people annually worldwide, yet current diagnostic practices cannot detect
an etiologic pathogen in ∼40% of dengue-like illnesses. Metagenomic approaches
to pathogen detection, such as viral microarrays and deep sequencing, are
promising tools to address emerging and non-diagnosable disease challenges. In
this study, we used the Virochip microarray and deep sequencing to characterize
the spectrum of viruses present in human sera from 123 Nicaraguan patients
presenting with dengue-like symptoms but testing negative for dengue virus. We
utilized a barcoding strategy to simultaneously deep sequence multiple serum
specimens, generating on average over 1 million reads per sample. We then
implemented a stepwise bioinformatic filtering pipeline to remove the majority of
human and low-quality sequences to improve the speed and accuracy of
subsequent unbiased database searches. By deep sequencing, we were able to
detect virus sequence in 37% (45/123) of previously negative cases. These
included 13 cases with Human Herpesvirus 6 sequences. Other samples contained
sequences with similarity to sequences from viruses in the Herpesviridae,
Flaviviridae, Circoviridae, Anelloviridae, Asfarviridae, and Parvoviridae families.
In some cases, the putative viral sequences were virtually identical to known
viruses, and in others they diverged, suggesting that they may derive from novel
viruses. These results demonstrate the utility of unbiased metagenomic approaches
in the detection of known and divergent viruses in the study of tropical febrile
illness.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3274504/

15

Symptoms, complications and descriptions of
Nodding Disease mentioned in various
articles about the epidemic in Uganda
Continuous and pendulous nodding of head (precipitated by
food or cold weather) that becomes progressively worse

Rhythmic chin to chest movements

Uncoordinated hand movements

Constant shaking of the hands

Disorientation, confusion

Dry skin

Dehydration

Severe itching

Rashes (that cause the skin to come off in patches)

Visible wounds

Anemia

Stunted growth

16

Brain atrophy

Blindness

Tiredness and sleeping

Sunken eyes

Headaches

Serious injuries or death resulting from falls during seizure
episodes

Malnutrition (inability to eat)

Cognitive problems

Staring spells

Loss of consciousness

Abnormal EEG brain waves, mental retardation, brain atrophy
and damage to the hippocampus and glial cells

Stunted growth

Opportunistic infections

Epilepsy

Seizures (fits) (Some have continuous seizure activity)
17

Sub-clinical seizures

Drooling, overproduction of saliva ("saliva is all over the body")

Vitamin A deficiency

Worms

Inability to sit

Progressive and fatal, often 3 years in duration

Loss of control of defecation and urination

Stunted growth

Crying, constant flow of tears

Constant nasal flow

Inability to close mouth

Inability to speak clearly (nonsensical talk)

Some develop pneumonia

Elevated neutrophil counts

Elevated percentages of eosinophils

18

Some have an elevated cell count, mainly lymphocytes and
monocytes

Microscopically visible microfilaria

Loss of neck muscle tone

Loss of muscle tone of the upper extremities

Dizziness

Low serum B6 concentrations

Some children set fires

Some children become violent and hurt others

Sources:
http://www.newvision.co.ug/news/628574-Nodding-disease-kills-200-children-in-North.html

http://www.newvision.co.ug/PA/8/16/703803

http://www.sott.net/articles/show/240740-Could-mysterious-nodding-disease-in-Africa-
have-global-implications-

http://www.medscape.com/viewarticle/757813

http://en.wikipedia.org/wiki/Nodding_disease

19

http://www.monitor.co.ug/artsculture/Reviews/-/691232/1317258/-/97bml/-/

http://www.ghfn.org/1-topics-general-pages/nodding-disease

http://www.ghfn.org/3-stories_videos-individual/cdc-discusses-bizarre-nodding-
disease?A=SearchResult&SearchID=1309275&ObjectID=3962521&ObjectType=35

http://www.observer.ug/index.php?option=com_content&view=article&id=16989:nodding-
disease-unlocking-it-will-take-years-of-research&catid=34:news&Itemid=114

http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2008.01671.x/full

http://www.acholitimes.com/index.php?option=com_content&view=article&id=504:odding
-disease-kills-50-people-in-pader&catid=15:health&Itemid=93

http://transitions.foreignpolicy.com/posts/2012/01/27/are_we_not_ugandans

http://www.monitor.co.ug/SpecialReports/-/688342/1305064/-/vtd6et/-/index.html

http://www.english.rfi.fr/africa/20120217-nodding-syndrome-cause-still-eludes-health-
experts

http://www.nature.com/news/mystery-us-outbreak-prompts-further-tests-1.10052


http://www.cnn.com/2012/03/19/world/africa/uganda-nodding-disease/index.html

http://caledonianmercury.com/2012/04/16/the-mystery-disease-striking-ugandas-
children/0032277

20

Is drooling the smoking gun link
between Nodding Disease and African
Swine Fever Virus?
This article mentions the saliva issue in pigs
with African Swine Fever in Uganda:
So the pigs with African Swine Fever in Uganda are drooling
and we know the kids with Nodding Disease in Uganda are
also drooling all the time.
And nobody says, hey, maybe these drooling pigs and drooling
children have the same disease? Not one scientist?
Nobody suggests that they should look at the saliva and salivary
glands of the pigs with African Swine Fever and the saliva and
salivary glands of the children with Nodding Disease to see if
there is an agent or pathological finding the two diseases have in
common?

21

Nodding Disease and
African Swine Fever
Overlap in Arua,
Gulu, Kitgum, Pader,
Lango, Anaka, and
Masindi, Uganda

22

Study says African
Swine Fever is
endemic to Uganda
https://docs.google.com/viewer?a=v&q=cache:NdiLNGon8xsJ:www.roavs.com/pdf-
files/vol_5_2011/313-
317.pdf+&hl=en&gl=us&pid=bl&srcid=ADGEESh5iq_LIMhQpO3xYYD2R85na9-j-
huP_qCHNBcOB4MuAw6EbZzZcdN-QUDJJAm1QV7FUElVmckKh8LEk63I9uumtFd5rQ-
Hj5FgkDPl7KqL0KOqlTikSvguOfCwQU5LuMFQ2tVx&sig=AHIEtbRXGQliv_URo-
LGFg5rYJc_AGHZWA

23

24

African Swine Fever in Arua, Uganda:
http://ugandaradionetwork.com/a/story.php?s=39689

Nodding Disease in Arua, Uganda:
"Misunderstanding the causes of nodding disease can have
disastrous consequences, as was the case with cholera some 150
years ago. So far, anti-epilepsy treatments appear to be helping
children experiencing nodding disease, but supplies of these
treatments are often scarce, and determining the ultimate cause
of epilepsy in these children should be a high priority for health
officials. Cases of epilepsy are often documented at high rates in
hospitals in the region, and there is thought to be a link between
epilepsy and cerebral malaria as well. In Arua Regional Referral
Hospital, in northwestern Uganda at the border with Sudan and
DRC, 7 percent of all outpatient children over age 5 in April
2009 were diagnosed with epilepsy. In 2004/05, 74 percent
(nearly 4500) of all cases in the Mental Ward were diagnosed as
epilepsy."
http://www.independent.co.ug/rwanda-ed/rwanda/5094-the-search-to-understand-nodding

25

African Swine Fever in Gulu, Uganda:
http://allafrica.com/stories/201109080222.html

Nodding Disease in Gulu, Uganda:
http://www.acholitimes.com/index.php?option=com_content&view=article&id=739:nodding-
disease-cases-reported-in-gulu&catid=1:news&Itemid=2

African Swine Fever Derails Pig
Rearing in Gulu:
UGANDA - Despite pig farming being a quick economic venture, farmers in Gulu district cannot
engage in pig rearing any more following an outbreak of African swine fever (ASF) in the
district in the middle of last year.
http://www.thepigsite.com/swinenews/27028/african-swine-fever-derails-pig-rearing-in-gulu

26

African Swine Fever in Kitgum,
Uganda:

Nodding Disease in Kitgum, Uganda:
http://www.acholitimes.com/index.php?option=com_content&view=article&id=763:nodding-
disease-continues-to-ravage-kitgum-district&catid=1:news&Itemid=2

27

African Swine Fever outbreak in
Pader, Uganda in 2010:
http://www.slideshare.net/ILRI/status-of-asf-in-uganda-by-c-rutebarika (See page 18)

Nodding Disease in Pader, Uganda:
"It's known loosely as 'nodding disease' and almost every family in the village we've come to see
in Pader District has at least one child suffering from it."

http://www.ghfn.org/1-topics-general-pages/nodding-disease

28

African Swine Fever in Anaka,
Uganda:

Nodding Disease in Anaka, Uganda:

29

African Swine Fever in Lango,
Uganda:
http://www.newvision.co.ug/D/8/16/728216

Nodding Disease in Lango, Uganda:
http://www.mail-archive.com/ugandanet@kym.net/msg27417.html

30

Nodding Disease in Masindi, Uganda:
"First 192 cases were registered in Kitgum and Pader in 2009 but over time, it has
spread to other districts of Lamwo, Gulu and some traces in Masindi. The numbers
have also increased from hundreds to thousands."


African Swine Fever in Masindi,
Uganda:
http://www.slideshare.net/ILRI/status-of-asf-in-uganda-by-c-rutebarika (See Page 15)

31

Nodding Disease and Meningitis in
Amuru, Uganda:
"Along with the current meningitis outbreak, the Amuru district has also registered nearly 80
cases of the mysterious nodding disease."

Continue reading on Examiner.com Meningitis death toll climbs in Northern Ugandan town of
Amuru - National infectious disease | Examiner.comhttp://www.examiner.com/infectious-
disease-in-national/meningitis-death-toll-climbs-northern-ugandan-town-of-
amuru#ixzz1pxFtwV5G

African Swine Fever in Amaru,
Uganda:
http://mobile.monitor.co.ug/News/-/691252/1263546/-/format/xhtml/-/1poq9uz/-/index.html

32

African Swine Fever Virus in Odek
Sub County, Uganda
http://www.meattradenewsdaily.co.uk/news/050811/uganda___african_swine_fever_.aspx

Nodding Disease in Odek Sub County,
Uganda
http://www.acholitimes.com/index.php/news/acholi-news/31-parents-turn-to-herbs-in-treating-
nodding-children-in-odek-sub-county

33

African Swine Fever in Sudan:
http://books.google.com/books?id=yE6ssPoWr4EC&pg=PA120&lpg=PA120&dq=sudan+%22a
sfv%22&source=bl&ots=ijOF_AaH1p&sig=KBwie4Pha6AnAGpGZb7Xtfmnjw8&hl=en&sa=X
&ei=bO43T-
nXG6bf0QG569GvAg&ved=0CB4Q6AEwAA#v=onepage&q=sudan%20%22asfv%22&f=false

Nodding Disease in Sudan:

34

Will consuming ASFV-infected pork in Adjumani cause Nodding Disease?

Adjumani Residents Defy Quarantine
on Pigs
UGANDA - Efforts to contain African swine fever, which broke out in Adjumani District seven
months ago, is being hindered by residents' defiance of a quarantine imposed by the veterinary
department.

http://www.thepigsite.com/swinenews/29417/adjumani-residents-defy-quarantine-on-pigs

35

Transmission of African Swine Fever
Virus
"ASF virus is transmitted between infected and susceptible pigs, by consumption
of the meat from infected pigs, by the bites of infected tampans (Ornithodoros
spp.) and by contact with material or objects (bedding, feed, equipment, clothes
and footwear, vehicles) contaminated by virus-containing matter such as blood,
feces, urine or saliva from infected pigs. Although warthogs are natural hosts of
the ASF virus, it has been well demonstrated that they are unable to transmit the
virus directly to domestic pigs. The role of other African wild suids (bush pigs of
the genus Potamochoerus and the giant forest hog, Hylochoerusmeinertzhageni), if
any, in the epidemiology of ASF has not been clarified, but bush pigs were able to
transmit virus to domestic pigs under experimental conditions. Experimental
studies have shown that ASF virus can only be airborne over short distances, not
much more than 2 metres. Apart from tampans, the only other arthopods that have
been shown to be capable of maintaining ASF virus for a reasonable period (up to
48 hours) and transmitting it to pigs are stable flies (Stomoxys spp.) Since these are
small flies, they would transmit the virus within rather between herds unless they
were inadvertently transported to another farm. . . . Sexual transmission in pigs has
also not been documented, but ASF virus is shed in genital secretions . . . ."

Source:
www.cabi.org/isc/ShowPDF.aspx?PAN=20093263092

36

Evidence that Nodding Disease is Communicable

Investigation into the Nodding
Syndrome in WittoPayam, Western
Equatoria State, 2010
Southern Sudan Medical Journal

"The school administration was in a dilemma as to whether or not they were required to have
separate classes for affected children [with Nodding Disease]. If one pupil in the class showed
symptoms, by the end of the year about seven other children were reported to have the same
condition. This raises the question of whether this is a communicable disease."

http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=12&ved=0CDMQFjABO
Ao&url=http%3A%2F%2Fwww.southsudanmedicaljournal.com%2Fassets%2Ffiles%2FJournal
s%2Fvol_4_iss_1_feb_11%2FSSMJ_4_1.pdf&ei=Fqp3T8riI-
rL0QGVxJnCDQ&usg=AFQjCNE8RtiO8YviRD9toah7DXFd9-Dz6w

37

Ugandan Man Has 7 children with Nodding Disease

Each child‟s nodding head eats at Ocitti‟s
pride
He was a proud man, because he ‘had it all’ – four beautiful women and 25
children. Animals, domestic birds and a fertile land to call his own.AugustinoOcitti
was the envy of many. With his head up in the air, Okidi Village bowed at his feet
– he was their village chairman for a decade. His peers regarded him as “the true
definition of an Acholi man.” But as I enter Ocitti’s expansive compound, a sore
silence welcomes me. I find him seated under a mango tree surrounded by a group
of unsettled children. He glances up occasionally to check on them, but his head is
bowed most of the time.The pride he once carried on his shoulders has faded and
is now replaced by the weight of seeing seven of his children nodding helplessly
because of a disease he has no clue about.His 12-year-old son, Lawrence Kabila, is
the most affected by the ailment. At his age, he can be mistaken for an eight-year-
old. The disease has stunted him. Kabila’s skin peels off effortlessly as he scratches
himself. His sticky legs appear too weak to support his head and chest which
appears heavily swollen.
--Helen Anena, The Saturday Monitor
http://www.monitor.co.ug/SpecialReports/-/688342/1357980/-/vwhgmi/-/

38

Symptoms of ASFV that overlap with
Nodding Disease
Chronic African Swine Fever
Symptoms (Just a very partial list)
ataxia
wasting
stunted growth
blindness
increased salivation
opportunistic infections

Nodding Disease Symptoms (Just a
very partial list)
ataxia
wasting
stunted growth
blindness
increased salivation (drooling)
opportunistic infections

39

Consumption of ASFV-infected Pork in Uganda

Uganda: Residents ignore warnings
concerning consumption of pork from
pigs killed by African Swine Fever
"In Adjumani District, in the North of Uganda, residents are continuing to disregard officials’
warnings concerning consumption of pork meat from pigs that were killed by African Swine
Fever (ASF). There have been health warnings regarding the risks associated with consuming
meat from pigs that were killed by ASF."

http://www.pigprogress.net/news/uganda-residents-ignore-warnings-concerning-consumption-
of-pork-from-pigs-killed-by-asf-8129.html

40

Cases of Nodding Disease Found in
Adults

Nodding Disease: Success stories under
difficult circumstances
byJavieSsozi

"Research shows that the disease is common between the ages of 7 and 13.
However recent cases show that the disease has been found in adults."

http://ugandaspeaks.com/2012/03/nodding-disease/

41

Ugandan towns with ASFV epidemics
Towns in Uganda that have had
African Swine Fever epidemics
Apac
Hoima
Iganga
Jinka
Kalaganga
Kamuli
Kayunga
Kitgum
Luwero
Masaka
Masindi
Mpig
Mubende
Mukono
Nakapiripirit
Rakai
Sembabule
Soroti
Wakiso

Source:
Overview of African Swine Fever (ASF) Impact and surveillance in Uganda (See Page 15)

42

Pathology of the Brain in Nodding Disease:

"Sub-clinical seizures have been
identified in electroencephalograms,
and MRI scans have shown brain
atrophy and damage to the
hippocampus and glial cells."

Pathology of the Brain in African Swine Fever:

"Hog Cholera and African Swine
Fever cause neurologic signs in baby
pigs with other signs of systemic
disease."
Source

43

Writer links Nodding Disease to sick pigs in Uganda
This writer, Angelo Opi-aiyaIzama, is the first to mention pigs
as a possible source of Nodding Disease. The writer confuses
Swine Flu and African Swine Fever, but does raise the important
question of the role of pigs in nodding disease:
Running with the theory that it is swine flu virus of one sort or another linked is not a stretch. It
is fairly common knowledge that scientists in this field are pre-occupied with the dangers of
direct transmission of swine flu to humans.

Indeed Gulu and surrounding districts are victims of outbreaks of the African swine flu that often
affects pig rearing. There are many articles to this effect. Just googling now revealed several
studies discussing the worries about swine flu transmissions from animals to humans and
humans to humans by amongst others the CDC. The agency, which is also involved in
investigating the Uganda nodding disease issue, is however yet to publicly link swine flu or its
research to nodding disease. Whether or how this link has been eliminated as also not been
explored judging from the coverage on the issue.

http://thisisafrica.wordpress.com/

44

Nodding Disease Horror: 12-year-old
victim is tied to a tree for 13 hours
everyday
This article by Edward Echwalu in The Observer is one of the
most disturbing pieces ever written about "Nodding Disease."

There is an interesting mention of pigs in the article which
should catch the attention of anyone who thinks "nodding
disease" may be coming from pigs infected with a strain of
African Swine Fever Virus.

45

Constant Nasal Flow in Nodding
Disease may be another indication that
it could be caused by African Swine
Fever Virus
"The disease, which has remained a puzzle to
many medical experts, is characterised by
mental and physical retardation, head nodding
and drooling, constant nasal flowand 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."
http://www.monitor.co.ug/SpecialReports/-/688342/1305064/-
/vtd6et/-/index.html

Constant nasal flow occurs in pigs with
African Swine Fever Virus which is
now endemic in the same areas of
Uganda that Nodding Disease is
affecting.

46

Scott Dowell of the CDC on Nodding
Disease in Uganda:
"As an example, we’ve been investigating a “nodding disease” in
South Sudan and Uganda. It’s a clearly odd syndrome where kids
aged five to 15 have head nodding. The kids definitely die with it –
it’s not rapidly progressive, but it seems to take hold of them. The
nodding is in fact a type of seizure and they do in fact have brain
disease. It looks to us like an epidemic epileptic syndrome. The
kids die of the things that kids with severe epilepsy die from –
they fall into a fire, they die when they are bathing, they get
opportunistic pneumonia, etcetera. When we first started
investigating five years ago, it was unclear what the origin was.
Now we have learned a lot more about what it is and is not,
although we don’t know the underlying cause."
--Scott Dowell
http://sciencespeaksblog.org/2012/02/15/how-the-cdc-responds-to-global-emerging-infections-
a-conversation-with-scott-dowell/

47

CDC says Nodding Disease is
a form of "atonic seizure."
Dr. Scott pointed out that one of the major progress areas was the ability to conduct tests and
rule out dozens of suspected causes which included the possible connection of the epidemic with
wartime chemical exposure.
According to this Atlanta based scientist, very little was understood about the syndrome back
2009 when CDC was starting its investigations about the disease that has since led to hundreds
of deaths with about 3000 currently infected.
The doctor says this has changed because CDC has discovered and documented key information
regarding the cause, symptoms and treatment of the nodding disease.
Much as the real cause of the nodding syndrome is still unknown, CDC researchers say they
have discovered „the immediate cause of the nodding itself‟ which they refer to as a special
seizure called an atonic seizure.
--Umar Weswala
http://umaruganda.blogspot.com/2012/02/nodding-syndrome-cdc-and-uganda-govt.html

Wikipedia on "atonic seizure":

http://en.wikipedia.org/wiki/Atonic_seizure

48

CDC on Nodding Disease: "The
children definitely die with it"
For now, the already affected children are sentenced to
death by the disease.

“The children definitely die with it – it’s not rapidly
progressive, but it seems to take hold of them. The nodding
is in fact a type of seizure which causes damage on the
brain,” said Dr Scott Dowell, CDC lead investigator, in an
interview with the Center for Global Health policy, United
States

By YasiinMugerwa& Agatha Ayebazibwe, The Daily Monitor
http://www.newvision.co.ug/news/629080-nodding-disease-top-us-scientist-jets-in.html

49

CDC: Cases of Nodding
Disease in Uganda have risen
to over 3,000 from 2,000
reported at the beginning of
this year.
http://www.newvision.co.ug/news/629174-nodding-disease-vector-control-centre-vital-in-
pader.html

50

CDC said Nodding Disease in Uganda
"could turn out to have just as huge
implications for the rest of the world."
In the case of nodding syndrome “we don’t know the
implications of this for the rest of the world,” [the CDC's]
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.
http://www.thestar.com/news/world/article/1121730--could-mysterious-nodding-
disease-in-africa-have-global-implications

51

CDC: Nodding Disease is at the top of its list of mystery outbreaks

CDC planning trial
for mysterious
nodding syndrome
by John Donnelly

The Lancet, Volume 379, Issue 9813, Page 299, 28 January 2012

Fred Hartman, Management Sciences for Health's Country Lead for
South Sudan and supervisor for the USAID-funded Sudan Health
Transformation Project II, has worked for 30 years in Africa, but when
he first saw children with nodding syndrome in 2010 he was shocked.
“I've been all over the world, and I've never seen anything like it”, he
said. “All the children look like they have cerebral palsy. So many of the
kids are malnourished. You bring them food and they can't eat it. And by
the time you make the diagnosis, it's too late for the children. It's really
sad.”
Dowell called the CDC's upcoming investigation important. “We are in
the business of detecting outbreaks. For the most part, when we
investigate an outbreak, the cause becomes clear, but periodically we get
these ones where the cause isn't clear”, he said. Asked where nodding
syndrome stood on the list of mystery outbreaks, Dowell said: “It's
right there at the top of the list.”

http://www.lancet.com/journals/lancet/article/PIIS0140-6736%2812%2960126-3/fulltext

52

BBC reports that initially the CDC suspected
Nodding Disease might be "psychogenic"
The syndrome stealing Uganda and South
Sudan's children
By Andrew Harding, BBC Africa correspondent

"Nodding Syndrome targets children exclusively, causing its victims to spasm uncontrollably
and eventually to waste away and die. Many thousands of children are believed to be affected."

"Initially, the CDC suspected it might be a psychogenic episode - something like mass hysteria.
But brain scans quickly confirmed that they were dealing with a disease that causes measurable
brain atrophy."


53

World Health Organization had been
treating nodding disease as a post-
traumatic stress disorder
Nodding disease spreads to Gulu
By Stephen Otage

http://www.monitor.co.ug/News/National/-/688334/1374304/-/awq3yhz/-/

54

Medical Teams International has sent over 45 volunteer
medical teams to Uganda to address immediate needs and to
mobilize long-term health initiatives.
http://www.salem-news.com/articles/march142012/med-teams-uganda.php

(PORTLAND, OR) - Medical Teams International has launched an emergency response campaign to fund
efforts to address nodding disease in northern Uganda. This mysterious disease only attacks children
and has no known cause or cure. Ugandan health officials estimate that over 3,000 children are infected,
with a high incidence of occurrence in the districts Medical Teams International is currently serving.

Nodding disease syndrome is a progressive condition characterized by head nodding, mental retardation
and stunted growth, body wasting and blindness. Children with the disease often die of malnutrition,
secondary injuries or infections related to the disease.

Medical Teams International will collaborate with community health workers in the region to provide
anti-seizure medicines, medical support, on-site mentoring of health workers, and psycho-social support
to families struggling to care for children with the disease.

“Our mobile medical clinics are the only source of care for thousands of families in the Pader District of
northern Uganda,” says Bas Vanderzalm, President of Medical Teams International. “More than 1,500
children in this district have this terrible disease. We’re asking people to pray for these children and to
support our efforts to help.”

Medical Teams International seeks to raise $30,000 to fund an initial response to this disease. The
organization has already received a $15,000 matching gift from an anonymous donor, doubling the
impact of individual donations.

For more information on nodding disease or to contribute to Medical Teams International’s work in
Uganda, please go to www.medicalteams.org

Since 2004, Medical Teams International has provided health care services, community health education
and immunizations to nearly 500,000 displaced people in various camps, settlements and clinics in the
northern districts of Uganda.

Medical Teams International has sent over 45 volunteer medical teams to Uganda to address immediate
needs and to mobilize long-term health initiatives.

Medical Teams International is a Christian global health organization working to demonstrate the love of
Christ to people affected by disaster, conflict and poverty around the world. Since 1979, we have sent
more than 2,100 volunteer teams and shipped more than $1.5 billion in lifesaving medicines and
medical supplies to care for 25 million people in 100 countries. Each year, more than 2,000 volunteers
contribute their time to care for those whom Jesus called “the least of these” in our world today.

55

Nodding Disease can cause "violent
tantrums."
Shockingly, no one, not even health officials, really knows
what causes this sickness or how it is transmitted. Nodding
disease is a mysterious illness that stunts brain growth
among the small children who are its victims, sometimes
causing mental retardation. (It takes its name from the
convulsive nodding motion that marks those infected with
it.) Sometimes its victims break out in violent tantrums, as
if possessed by demons; some act as though they're being
pursued by people armed with machetes or guns. In some
cases victims report being weighed down or suffocated by
"something heavy" that they cannot see. Those who
contract the disease usually die from it within a few years. It
is a horrible thing to watch.
--By Denis Barnabas

http://transitions.foreignpolicy.com/posts/2012/01/27/are_we_not_ugandans

56

Nodding Disease Leaves Men Sexually
Starved
The nodding disease is leaving many men sexually starved,
according to Dr. Conan Katerega, a senior psychiatrist at Gulu
Regional Referral Hospital. This is because most men fear to
impregnate their wives because they are not sure about the
new generation.

The disease which hit the sub region three years ago has
claimed over 200 lives and infected thousand others many of
whom are children below 18 years. Doctors at Gulu Regional
Referral Hospital say no proper guidance has been given about
the disease and more research is needed to find out more about
the disease.

Doctors add that the disease has left most discouraged from
producing more children. “Some communities believe that the
disease is so infectious,” they said. “People have resorted to
abstaining from sex with belief that it is useless to produce
children when they are not sure of their generation,” they said.
By Willy Cho Woo, in RedPepper, (a Ugandan newspaper)
http://redpepper.co.ug/welcome/?p=26783

57

2009 survey found out that 83 per cent of the Nodding
Disease cases verified were suspected to have eaten
bush meat:

Government on the Spot Over
Nodding Disease
by Agatha Ayebazibwe, Daily Monitor, 2012-01-24

"The 2009 survey found out that 83 per cent of the cases verified
were suspected to have eaten bush meat"

http://str8talkchronicle.com/?p=20097

Bush meat includes "bush pigs" and "giant forest hogs" which
are probably carriers of African Swine Fever Virus, given how
widespread ASFV is in northern Uganda.

Wikipedia on giant forest hogs:
http://en.wikipedia.org/wiki/Giant_forest_hog

58

Epilepsy in Uganda was linked to pork in 2009

Thursday, December 3, 2009

http://www.thepigsite.com/swinenews/22608/epileptic-seizures-linked-to-pork-
worms

Epileptic Seizures Linked to Pork Worms
UGANDA - In a bid to educate the public about the risks of consuming pork, the Epilepsy
Support Association, Uganda, an umbrella organisation for people living with epilepsy has
gone into a partnership with the Veterinary Department of Makerere University to
establish the relationship between pork and epileptic seizures.
Preliminary clinical traces established by the association indicate that pork-related causes of
epilepsy are due to TaeniaSolium, a worm that thrives in pigs and when consumed embeds in the
human brain thus causing an infection of the nervous system.

"The incidence of epilepsy is thought to be higher in the Sub Saharan Africa because of an
increase in brain injury and the central nervous infections, and pork is believed to be a grave
cause," Dr Angelina KakoozaMwesige, the President Epilepsy Society Uganda said recently.
She said the infection referred to as Neurocystercercosis is cerebral and partly responsible for
symptomatic causes of epilepsy.

In a six-page document presented to journalists in Soroti recently, DrMwesige said more than 80
per cent of the global burden of epilepsy is found in the developing countries with 10 million
cases in Africa alone. Soroti is one of the districts with the highest pig population, reports
AllAfrica.com. "We conducted a survey last year and it was established that 25 per cent of
epilepsy prevalence is linked to worms eaten through badly cooked pork," Mr Augustine
Mugarura, the National Director Epilepsy Support Association Uganda said.

African Swine Fever in Soroti, Uganda

www.slideshare.net/ILRI/status-of-asf-in-uganda-by-c-rutebarika (See page 15)

59

Study suggests more boys
than girls have Nodding
Disease in Uganda
"The Ministry of Health is to start its own investigations into
nodding disease in Northern Uganda as they await results from
the Centre for Disease Control in Atlanta. The ministry together
with the Acholi Parliamentary Group is set to go on a fact
finding mission in Kitgum one of the most affected of the three
districts in the region where close to 3000 people aged between
2 and 15 are afflicted."
http://www.youtube.com/watch?feature=player_embedded&v=7wCam8r36X0

60

Medics To Examine Brain Of Nodding
Disease Victim
Medical doctors want to examine the brain of a dead person
confirmed to have succumbed to the notorious Nodding Disease
for thorough examining.
A clinical psychiatric, Dr. Sam Okuni who works with the mental
health department in Gulu Referral Hospital said that together
with various partners, they have done a lot of research and are
about to out the results, but need to dissect the brain of a dead
victim to get to the bottom of the phenomenon.
By Ojok James Onono, RedPepper (A Ugandan newspaper)
http://redpepper.co.ug/welcome/?p=32380

61

Women tie themselves to trees over
nodding disease
By AGATHA AYEBAZIBWE, Daily Monitor
Women activists tied themselves on trees for 30 minutes yesterday to
show solidarity with mothers whose children are suffering from nodding
disease syndrome.The women expressed concern for their colleagues in
Acholi Sub-region, condemning government’s failure to quickly address
the nodding disease problem. They said mothers in northern Uganda are
suffering psychologically because of having to tie their sick children to
trees to save them from injury when they fall. Read more.
http://www.monitor.co.ug/News/National/-/688334/1361630/-/axeneez/-/

62

A Day in the Life of the PAZ Project: Pig farming and
slaughtering in Western Kenya
by James Miser Akoko

There is close interaction between pigs and people as they are either tethered within the
homestead or are allowed to scavenge around the homestead for food. In some homes, pigs
wallow in mud mixed with their urine and faecal materials, as flies and other insects celebrate.
The role played by pigs in transmitting zoonotic diseases and the risk factors for human infection
are poorly understood in western Kenya.The methods of slaughter used in slabs in the area also
raise welfare issues. The pig‟s legs are tied and a sharp knife or a machete is used to cut around
the neck of a struggling pig that cries loudly as blood spills on the bare hands and feet of the
unprotected slaughter men. The noise that emanates from these slabs is normally disturbing for
many people.It is normal to find people slaughtering without protective clothing, and dogs are
always on duty waiting for any meat that could drop; and of course you cannot rule out the
presence of flies. It is also not uncommon to find children and people eating other foodstuffs next
to the slab, an obvious public health hazard. This means that the hygiene and safety of the
slaughter house workers and the pork consumers served by the slabs is an issue that requires
action.
http://biolives.wordpress.com/2012/02/28/a-day-in-the-life-of-the-paz-project-pig-farming-and-
slaughtering-in-western-kenya/

63

Ugandan government seems to be trying to control what people know about
Nodding Disease

Censorship ahead of the IPU assembly
in Kampala: On Nodding Disease
http://ugandaspeaks.com/2012/03/censorship-ahead-of-the-ipu-assembly-in-kampala-
on-nodding-disease/

64

Beatrice Anywar is praised as "Mamma Nodding Disease"

Anywar to the rescue
By RukiyaMakuma

http://www.independent.co.ug/news/news-analysis/5461?task=view

She was desperate to call attention to the gravity of a rare disease ravaging northern Uganda
that is crudely called “nodding disease”. Opposition firebrand Beatrice Anywar, however, never
imagined how ferrying some of the affected children to the capital would turn out.
The Kitgum Woman MP first identified 10 children and made arrangements to move them to
Mulago National Referral Hospital in Kampala. Then she placed an important phone call – to
President YoweriMuseveni. It was a smart move.
She wanted the President to know her intentions.

“Initially the President was worried about whether the disease was contagious but when he was
informed that it was not, he offered his support,” she says.

Beatrice AtimAnywar
From Wikipedia, the free encyclopedia

http://en.wikipedia.org/wiki/Beatrice_Atim_Anywar

Beatrice AtimAnywar, also known as Mama Mabira, born 1964 in Kitgum,[1] is an Ugandan politician
and member of Parliament for the opposition party FDC, and minister of the Environment in the Shadow
Cabinet.[2] She was chosen to the parliament in 2006 by defeating the NRM candidate Santa Okot.[3]
She became well known for her work to save the Mabira Forest in Uganda. The president
YoweriMuseveni, and the government, had prior to her work decided to sell the forest to the sugar
company Scoul to cut it down and convert it into a sugar cane plantation for ethanol production. Atim
fought along with for example National Association of Professional Environmentalists to stop the felling,
and organized a boycott of Scoul's sugar.[2] Her work has led to several environmental prizes.[3]

65

School Becomes an Unfriendly
Environment for Children with
Nodding Disease
http://www.acholitimes.com/index.php/news/acholi-news/34-nodding-disease-is-destroying-
families-and-communities

66

Report from Gulu: Nodding Disease is
Destroying Families and Communities
http://www.acholitimes.com/index.php/news/acholi-news/34-nodding-disease-is-destroying-
families-and-communities

67

WHO and CDC plan to hold Nodding Disease conference in July

Why are Uganda's children nodding to their
deaths
By Amy Fallon

The illness is having a tragic impact on the Pader, Lamwo and
Kitgum districts of northern Uganda. At least 170 children have
died, with more than 3,000 affected in the area, the World
Health Organisation (WHO) estimates. The figures are likely to
be higher because not all cases are reported."The nodding
syndrome is a serious public health problem, with psychological,
social and economic consequences," says Dr Charles Okot, the
organisation's country advisor in Uganda. The situation is so
grim that the WHO and the Centers for Disease Control and
Prevention, a US federal agency, are hoping to hold a
conference on the disease in July, attended by medical experts
from around the world.
http://www.independent.co.uk/news/world/africa/why-are-ugandas-children-nodding-to-their-
deaths-7628107.html

68

10 Reasons that Uganda absolutely
cannot admit that Nodding Disease is
caused by African Swine Fever Virus
even if that is the obvious cause.

1. There would be mass panic in Uganda and in other countries.

2. All pigs in the northern part of Uganda as well as the rest of the country would
be suspected of being carriers of the virus. They would all have to be killed.

3. Many people rely on pigs for food and financial support.

4. In rural areas most people have two or three pigs. They are allowed to roam
around freely.

5. If people are now infected by ASFV the epidemiology of ASFV suggests they
are capable of transmitting ASFV to others.

6. Health care workers will be terrified of contracting African Swine Fever Virus
from children with Nodding Disease.

7. Tourism in Uganda would stop immediately. Movement of people in or out of
the country would stop.

8. The economy of Uganda would collapse.

9. Other countries with their own ASFV epidemics would encourage Uganda to
keep a lid on this information.

10. The situation would be made even worse by the probability that bush pigs and
forest hogs are also carrying the virus. Ticks also carry the virus.

69

The CDC’s scientists have been
investigating Nodding Disease since
November, 2009. Strangely, they still
haven’t tested the Nodding Disease cases for
African Swine Fever Virus even though
scientists at Uganda’s largest university can
test pigs in 24-48 hours.

Why? What’s
that all about?
70

Nodding Disease and Swine Fever (Second Edition)

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