This study only looks at the social and economic part of the disease and does not take an account of natural science. In addition, this analysis is carried only to estimate the effect of people living with epilepsy and nodding syndrome on social exclusion. Moreover, the main research question lays on do people with epilepsy and nodding syndrome have access to education, health care, and food security, and livelihood?

1. 1
The impact of People with Epilepsy (PWE) and nodding
syndrome (NS) on social exclusion in 4 counties of WES.
Prepared by Noah Issa Philip Benjamin
Email; noahissaphillip@gmail.com
Tel; +211 927 200 500

2. 1
Table of Contents
1. Introduction .......................................................................................................................2
2. Methods................................................................................................................................3
2.1.1 Study site and data collection....................................................................................................3
2.1.2 Statistical Models............................................................................................................................3
2.1.3 Data analysis.....................................................................................................................................4
2.1.4 Summary statistics.........................................................................................................................4
3. Regression results............................................................................................................7
4. Recommendations............................................................................................................9
5. Study limitations............................................................................................................ 10
6. Conclusion........................................................................................................................ 10
7. Acknowledgment........................................................................................................... 10
8. Reference:......................................................................................................................... 11
Meaning of Abbreviations and Acronyms
ADL Activities of daily living
PWE/NS People with epilepsy and nodding syndrome
NS Nodding syndrome
OLS Ordinary least square
SEM Sudan Evangelical Mission
LFTW Light For The World
VSLA Village Saving Loans Association
NSA Nodding Syndrome Alliance
List of figures
Figure 1 Gender distribution..............................................................................................................5
Figure 2 Age groups of PWE/NS .......................................................................................................5
Figure 3 Education level of PWE/NS...............................................................................................6
List of tables
Table 1showing the OLS results........................................................................................................8

3. 2
1. Introduction
Nodding syndrome (NS) is one of the neurological illnesses with unknown etiology. It
was first documented in united Republic of Tanzania in early 1960s and it was later
found in south Sudan in early 1990s and some parts of northern Uganda in 2007.
Nodding syndrome case is defined as someone with occurrences of unintentional head
nodding. It is locally known as [adravu Linya ro] because it most starts when the
nodding syndrome person sees a food.
Nodding disease typical affects children between the ages of 5 and 15 years old, that
causes progressive cognitive dysfunction, neurological deterioration, stunted growth and
a characteristic nodding of the head. Many studies have been carried out in all the three
countries but it seems that very little is known about the cause of the disease from all the
extensive investigations to understand the causes of the disease.
At first nodding syndrome has seen as a mere disease that could be tackled within
seconds but it gets worse after scientists and researcher failed to reach valid conclusion
about the causes of the disease. Currently the prevalence of nodding syndrome is
experienced in South Sudan’s western Equatoria state, Eastern Equatoria state, Central
Equatoria state and Lakes state.
Epilepsy remains a major health problem in sub-Saharan Africa, where huge treatment
gaps result in high comorbidity and mortality. Studies suggested that financial limitations
to acquire antiepilepsy drugs are the leading reasons for the poor treatment by persons
with epilepsy. This paper is the first to study the effect of people living with epilepsy and
nodding syndrome on household food security. The investigations focused on four
counties of western Equatoria state, namely Mundri East, Mundri West, Mvolo and
Maridi counties. These counties are the most affected counties.
People in these counties’ lives in family compounds of grass thatched roofs [few lives on
concrete houses] and mud huts [tukul] and each compound is connected to each other
through footpaths.
Epilepsy has traditionally been referred to as a disorder or a family of disorders,
rather than a disease, to emphasize that it is comprised of many different diseases
and conditions.

4. 3
The term social exclusion is the process in which individuals are blocked from (or
denied full access to) various rights, opportunities and resources that are normally
available to members of different groups.
Social exclusion can also be defined as a situation of marginalization experienced by
individuals. The exclusion reflects their failure pf the society to be inclusive to all
people. Persons with disabilities are excluded due to barriers that restrict their
communication, physical access, and participation in activities taking place in their
communities.
This study only looks at the social and economic part of the disease and does not take an
account of natural science. In addition, this analysis is carried only to estimate the effect
of people living with epilepsy and nodding syndrome on social exclusion. Moreover,
the main research question lays on do people with epilepsy and nodding syndrome
has access to education, health care and food security and livelihood?
2. Methods
2.1.1 Study site and data collection.
This study was carried out in four Eastern counties of Western Equatoria state of
the republic of South Sudan, more precisely in Maridi, Mundri East, and Mundri
West and Mvolo counties. The data collected sum up to 1,754-sample population
from the four counties. The recent community-based (intervene survey) study by
the Sudan Evangelical mission (SEM) and Light for the World (LFTW) team showed
us that epilepsy prevalence in these counties are high. Although the data collected
did not collect information from all the epilepsy patients in those counties but, the
few collected was to know the severity of the disease within the community and
how those patients be helped through the community provision of drugs.
2.1.2 Statistical Models
This paper used OLS regression model to estimate the impact of people living with
epilepsy and nodding syndrome on household food security. It is assumed that there
is linear relationship between the dependent and independent variables. Where
activities of daily living (ADL) status of people with epilepsy are the dependent

5. 4
variable while age, sex, education level, and livelihood status of the caregiver and
health facility of reference are the independent variables. These can be statistical
estimated as;
𝐲 = 𝛂 + 𝐗𝟏𝛃𝟏 + 𝐗𝟐𝛃𝟐+𝐗𝟑𝛃𝟑 + 𝐗𝟒𝛃𝟒 + ⋯ 𝛆𝐢𝐣
Where
y is the ADL status of the PWE/NS( i. e. whether the patient is dependent =
0 or independent = 1) And is used as the measure of social exclusion
α is the constant
X are the control variables or independent variabes such age, sex, location, education Level,
livelihood status of the caregivers and health facility of reference.
β are the coefficients to be estimated
ε are the error
2.1.3 Data analysis
The data collected were entered into Microsoft excel 2019 spreadsheet and data
analyses were done using STATA version 14.0. The survey was performed in 12
Payams of 4 counties in western Equatoria state, with a total population sample of
1,754 all nodding disease patients, and some households have more than one
nodding disease patients at home.
2.1.4 Summary statistics
Out of the total population samples, collected 53% of the total sample collected is
male and only 47% of them are female as shown in the pie chart below.

6. 5
Figure 1 Gender distribution
The mean average of ages is from 11-20 years of age with a total percentage of 56%
and 33% from 21-30 years of age. Therefore, the age group from 11-30 has the
highest number of people with nodding and epilepsy disease.
Figure 2 Age groups of PWE/NS
That means the age groups from 11-20 and 21-30 have the highest frequencies from
the sample collected as shown above.
Although epilepsy and nodding disease seems to be a notorious disease, people
living with it did not give up. They still recognize and know the importance of being
educated. Epilepsy and nodding patients who are still going to formal education to
different classes are about 16.08%, and people who dropped out of the schools due

7. 6
to the severity of the disease and about 45% and only few completed both primary
and secondary education (1%).
Figure 3 Education level of PWE/NS
From the sample population of the people living with epilepsy and nodding
syndrome about 38% have never gone to school and the rest of the population are
have gone for informal schools as the histogram shows.
The paper also looks at how the people living with epilepsy and nodding syndrome
are handled. We got that 89% of the total sample collect are independent that means
he/she could be able to do other domestic/external works i.e. the person could fetch
water, take bath alone. But computations also got about 11% of them from the
sample collected depend on their caregivers and could not do anything alone and
therefore have to rely on their caregivers’ to assist them in carrying out activities of
daily living and other self care activities. It increases the burden of care among
parents and caregivers, as they have to cope with the extra responsibility of having
dependent persons with nodding/ epilepsy under their care while participating in
domestic chores and livelihood activities at the same time.

8. 7
3. Regression results
The OLS model showing risk of epilepsy by gender, age, locations, education level,
livelihood status of the caregiver and the health facility of references. R squared of
the OLS regression is 0.068%, which means that much of the variations are
explained within the model. As we can see from the OLS regression table results that
out of six variables inserted into OLS regression, five of them have significant effects
at different significant levels ranging from 0.05%, 0.01% and 0.1% respectively.
We found that the age of people living with epilepsy and nodding syndrome has
negative impact at 5% significant level. As the age of the PWE/NS increases by one
year their probability of having access to health care, education and livelihoods
increase by one [1%] percent whether the ADL of PWE/NS is independent or
dependent. When adults care for their health, they will know the importance and
value of education. It will in turn make him/her to go to school and get educated
and increase their opportunities to access income generation opportunities, become
self reliant and secure the necessities of life.
The other significant variable with positive correlation with the ADL of PWE/NS at
1% is the Educational Level of the people living with epilepsy and nodding disease,
this study suggests that as the year of schooling of the PWE/NS increases by one
year their probability of getting paid jobs increases by one [1%], simple because
these people are supposed to be given special needs as disabled people. And also,
parents of the nodding and epilepsy children have fears in sending their children to
school because they might have convulsions and no one will care for them as their
parents are doing to them. Therefore, for the people living with epilepsy and
nodding syndrome who got the condition at their late age and have already been in
school and have knowledge in business, Sudan Evangelical Mission and Light For
The World has so far engaged them or their parents with the aim of facilitating their
participation in villages saving loan association (VSLA). The groups select their
leadership from group membership to guide their activities.

9. 8
Table 1showing the OLS results
VARIABLES Status of pwe/ns
Gender -0.0350**
(0.0149)
Counties (location) -0.0357***
(0.0109)
Education 0.0546***
(0.00512)
Livelihood status of caregiver -0.00573
(0.00819)
Health facility of reference 0.00214*
(0.00123)
Age group -0.0252**
(0.0105)
Constant 1.029***
(0.0400)
Observations 1,754
R-squared 0.068
Robust standard errors in parentheses
*** P<0.01, ** p<0.05, * p<0.1
Source; SEM and CUAMM pre-intervention survey, collected from march-April 2020
Locations where the epilepsy and nodding patients live varies, therefore there is
negative correlation between them at 1% significant level. This suggest that people
who live near the health facilities have better access to health care which in turn
improves their health status, i.e. PWE/NS can be able to have access to education
and livelihoods as they have fewer seizures opposed to people who live very far
from the health facilities. More especially patients who are independent are likely to
have better access to education, livelihood and health care because epilepsy and
nodding syndrome is under clinical management, they might have convulsion[s] one
or twice a month.
Health facility of reference is one of the significant variables with positive
correlation with the dependent variable at 10% significant level. This implies that
patients that stays near health facilities are more likely to have access to better
health care, education and could be able to provide livelihood assistants to the
family members because any epilepsy and nodding patients who have access to

10. 9
health care are not exposed to daily convulsion and head nodding then people who
stay far away from the health centers.
Gender is one of the variables of interest and the OLS result shows that gender has
negative correlation with the dependent variable at 5% significant level. This
implies that PWE/NS that dependent [females] are at a higher risk of gender-based
violence due to individual factor of dependency. Their physical and mental
limitations inspire unfair social treatment that creates an atmosphere that can lead
to abuse and exploitation. It would be important to consider preventive and
responsive activities on gender based violence to persons with nodding syndrome/
epilepsy.
Likewise, as seen from the histogram, male tend to have more percentage in this
study and only few of them may have access to basic education, health care and
livelihoods because as it could be witnessed that most of the persons with nodding
syndrome/ epilepsy have intellectual disabilities. The intellectual disability limits
their ability to learn at an expected level and function in daily life.
The variable livelihood status of the caregiver tend to have negative correlation with
the dependent variable but not significant. Therefore, we found that most of the
caretakers are involved in subsistence farming and the living standards were
extremely poor as a product of poverty. Only few of the caregivers are working or
running small-scale businesses in all the four counties.
4. Recommendations.
Our study recommended the following;
 SEM and partners should involve more caregivers; parents and persons with
nodding syndrome/ epilepsy in VSLA activities and other income generating
activities in all the four counties to enable them participate in decent
livelihoods and boost their economic independence.

11. 10
 Community drug provisions of antiepileptic drugs for the NSA project to
PWE/NS should be expanded to reach out to persons with nodding syndrome
residing far from the selected treatment sites.
 Vocational training opportunities should be availed to PWE/NS to enable
them build skills in areas like carpentry, dressmaking, embroidery and
hairdressing to youths and adults for them to generate income for self-
reliance.
5. Study limitations.
Data collected was not enough to carry out a more in depth study; this study only
used the ADL status, education and livelihood of the PWE/NS to measure the impact
of social exclusions on the people with epilepsy and nodding syndrome. However,
variables such as distance to the health facilities, types of the antiepileptic drugs
used by the patients and income earned per month by the PWE/NS and family
history of epilepsy are not included in the pre-intervention survey. Furthermore,
serial follow-up data need to be conducted on these variables mentioned above and
the medical history of the patients were not conducted.
6. Conclusion
This study confirms that nodding syndrome and epilepsy are severe in the four
counties of Western Equatoria state, because age, gender and locations where
PWE/NS are residing have negative effects on the social exclusion. While education
and health, facilities of reference have positive effects on the social exclusion.
7. Acknowledgment
The author is grateful to both the SEM and LFTW for the successful data collection,
and all who contributed in the data collection and data entry.

12. 11
8. Reference:
1. silver, Hilary (1994). "Social Exclusion and Social Solidarity: Three
Paradigms". International Labour Review. 133 (5–6): 531–78.
2. Dowell, S. F., Sejvar, J. J., Riek, L., Vandemaele, K. A., Lamunu, M., Kuesel, A. C.,
... & Nutman, T. B. (2013). Nodding syndrome. Emerging infectious
diseases, 19(9), 1374.
3. Winkler, A. S., Friedrich, K., König, R., Meindl, M., Helbok, R., Unterberger, I., ...
& Jilek‐Aall, L. (2008). The head nodding syndrome—clinical classification
and possible causes. Epilepsia, 49(12), 2008-2015.
4. Tumwine, J. K., Vandemaele, K., Chungong, S., Richer, M., Anker, M., Ayana, Y.,
... & Spencer, P. S. (2012). Clinical and epidemiologic characteristics of
nodding syndrome in Mundri County, southern Sudan. African health
sciences, 12(3), 242-248.
5. Johnson, T. P., Tyagi, R., Lee, P. R., Lee, M. H., Johnson, K. R., Kowalak, J., ... &
Sejvar, J. (2017). Nodding syndrome may be an autoimmune reaction to the
parasitic worm Onchocerca volvulus. Science translational medicine, 9(377)
6. Aall L. Epilepsy in Tanganyika. Rev Newsl-Transcult Res Ment Hlth Probl.
1962; 13:54-57