Nodding Disease - University of Kansas Medical Center

Stacy Hanson
University of Kansas
School of Nursing
Gulu, Uganda
To Africa With Love
Immerse yourself in the
Ugandan Culture…
• Location: Northern Uganda
• Population of Gulu: 418,650 with more than half being children
below the age of 15
• Language: Acholi
& English
• Religion: Catholic
• Tribe: Acholi
• Life Expectancy:
• M: 51.66 years
• F: 53.81 years
Major Health Issues In
• Malaria
•Nodding Syndrome
• Upper respiratory tract infections
• Diarrhea
Description & Statistics of
Nodding Syndrome in Uganda
• Occurs in Acholi and Lango tribes
• Became prevalent in 2002
• Most common in ages 5-15 years old
• More than 3,o00 kids have this
syndrome in Northern Uganda
• Most common symptoms
• Nodding of the head
• Seizures
• Mental retardation
Symptoms & Progression
of Nodding Syndrome
• The most common characteristics of this disease have to deal with
head nodding that is triggered by feeding, a cold breeze, or cold
(Idro et. all, 2013b) .
• As the disease progresses children become severely
malnourished, have slurred speech and often become physically
and mentally stunted and will drop out of school within 2-4 years
of onset
(Idro et. all, 2013b) .
• Peripheral muscle wasting is present and most patients that are
affected have another type of seizure disorder (Idro et. all, 2013b)
Nodding Syndrome contributing factors from
personal interviews with the people of
• 1) They believe that it is
caused from an autoimmune
dysfunction related to
specific protein in brain. A
previous infection starts an
autoimmune response
(Dr. Beatrice, personal communication, June 18, 2013).
Nodding Syndrome contributing
factors continued…
• 2) They theorize that Vitamin B6 deficiency is a
contributing factor:
which causes:
Motor function problems
Cognitive problems
(Dr. Beatrice, personal communication, June 18, 2013)
• Side note: Vitamin B6’s main involvement is in the
formation of myelin
Nodding Syndrome contributing
factors continued…
• 3) Lack of sexual development
related to adrenal gland or
growth hormone
(Dr. Beatrice, personal communication, June 18, 2013)
• 4) Toxin – mining gold and
mercury upstream and then
people drink downstream
(Dr. Beatrice, personal communication, June 18, 2013)
This picture was taken when visiting the
botanical gardens.
Barriers discovered in
• Lack of income
• Lack of resources/education
• Lack of ability to get all nutrient requirements
• Lack of transportation
• Belief that nodding syndrome
is transmitted via airborne
Negative stereotypes present in Gulu
regarding Nodding Syndrome..
• Nodding syndrome is a result of evil spirits and
curses – believe that it is happening due to the
war and people who died during this time
were not given a proper burial
(Mutamba et. all, 2013).
• Nodding syndrome is incurable and fatal
(Mutamba et. all, 2013).
• Nodding Syndrome makes the patient a
burden to society because it disables them
(Mutamba et. all, 2013).
Community, Individual & System
Strategies present…
• Tie the children up so that the parent can go to work
and not have to worry about the child running off and
getting hurt
(Benedict, personal communication, June 24, 2013).
• Drop them off at “wards” so they are no longer a
burden to the family.
• Quarantine the patients who show symptoms due to
belief that it spreads via airborne transmission
(Benedict, personal communication, June 24, 2013) .
• CDC has been involved to investigate the process,
etiology, and treatments of this disease.
• No known cure but CDC continues to research the disease to
make healthcare strides (Indro et. all, 2013a)
• Anti-epileptic drugs such as: Sodium valproate, and
phenobarbitone help reduce some, but not all, symptoms. Health
outcomes in response to medications cannot be proven (Indro et. all,
• Prevalence in Northern Uganda was not as high as Southern
• Rehab strategies:
• Gross motor skills are often affected but a way to improve and
strengthen these aspects would be to have the patient participate in
activities like jumping, playing in sand, or skipping (Indro et. all, 2013a).
My personal growth…
There truly are no words to describe the
abundance of love I felt over in Gulu, Uganda.
The nurses and students of Lacor School of
Nursing and Saint Mary’s Lacor Hospital
showed me what it is like to be utterly
passionate about your career. I have gained
cultural competency that will allow me to
transform the way I care for my future
patients. Traveling to Uganda allowed me to
find the beauty in the Acholi culture.
Qualities I have gained from the Ugandans: Selflessness -Ability to be present -Ability to
suspend judgment -Ability to be a better
listener -I have learned how to be a friend;
how to compromise. & more.
My mentor Martha & I earning our helping
babies breathe certificate together
The love, generosity, vulnerability and
humility in Uganda is admirable and
really does not compare to anything
like what we are used to here in the
states. I initially thought I would have
something great to teach them and I
think they expected the same.
Truthfully I feel like they have taught
me an incredible amount about life,
love, and happiness.
Creating ever-lasting
memories learning traditional
“As you move through this life… you leave marks
behind, however small. And in return life – and travel –
leaves marks on you.” — Anthony Bourdain
Idro, R., Musubire, KA., Bayamah Mutamba B., Namusoke H., Muron, J., Abbo, C.,
Oriyabuza, R., . . . Mbonye, AK. (2013a). Proposed guidelines for the management
of nodding syndrome. African Health Sciences, 13(2): 213-232. Doi:
Idro, R., Opoka, R.O., Aanyu, H. T., Kakooza-Mwesige, H., Piolya-Were, T.,
Namusoke, H., Busoke, S. B., Nalugya, J., . . . Tumwine, J. K. (2013b). Nodding
syndrome in Ugandan children - clinical features, brain imaging and complications:
a case series. BMJ Open, 3, 1-11.
Lacor Hospital. (2002). St. Mary's Hospital Lacor. Lacor Hospital > Home. Retrieved
July 12, 2014, from
Mutamba, B., Abbo, C., Muron, J., Idro, R., & Mwaka, A. (2013). National Center for
Biotechnology Information. Stereotypes on Nodding syndrome: responses of health
workers in the affected region of northern Uganda. Retrieved July 12, 2014, from

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