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DISEASE
SYNDROME

OFFICE OF THE CLERK TO PARLIAMENT

F BRUARY, 2017
 1

In accordance with Rule 177(b) and (e) and 147(c) and (d) of the Rules of
Procedure; the Committee on Gender, Labour and Social Development
conducted a field visit to Northern Uganda to find out the impact of Nodding
Disease Syndrome on the community and how it is being managed.

Northern Uganda is a region which has been disadvantaged in several ways.

The area is recovering from the effects of war and many people are living below
the poverty line. This is exacerbated by the Nodding Disease Syndrome, a
disease which was discovered in the region in 1998 and affects young people
between the ages of 5 to 15 years, and in some few cases, up to 25 years. The
cause of the syndrome remains largely unknown. If a victim is left untreated for
a long time, the person becomes paralysed and eventually disabled. The
parents are unable to engage in food production or other economic activities
because they have to look after the victims on a full-time basis. However, the
disease is manageable through medication, nutrition and physiotherapy.

3.0 OBJECTIVES

1. To find out the effect of Nodding Disease Syndrome;

u. To establish how Nadding Disease Syndrome is being managed;

METHODOLOGY

In order to fulfil the above objectives, the following methods were used.

1 Meetings

The Committee held meetings with caretakers and administrators of children

\ \~ffected by Nodding Disease Syndrome in Tumangu Rehabilitation Centre in
\rll.__....., Kitgum, Awere in Pader and Odek Rehabilitation Centre in Gulu, village health
teams, workers of humanitarian non-governmental organisations, Hope
and Caritas and Pader district officials.
..............L<........,....,
The Committee toured Tumangu Rehabilitation Centre in Kitgum and Odek
Rehabilitation Centre in Gulu to get a first- hand account of the state of affairs
at the institutions.

1.1 Effect on the victims

The Committee found out that Nodding Disease Syndrome adversely affects the
health of the victim and is usually manifested with another disease. The child
may have Nodding Disease Syndrome and Epilepsy or Nodding Disease
Syndrome and mental complications. That leads to multiple disability
challenges yet there are no special schools for the children. Growth of the
victim is retarded to the extent that a 22-year old can look like a 9-year old.
The victims have a high temperament, argue a lot and do not accept correction.
The drugs given as medication lead to a high appetite for food and increase
their libido, forcing them to rape or initiate sex. The children are stigmatised by
the community due to ignorance about the cause of the disease and how it is
spread. Access to medical care is hard for many victims because their homes
are far away from the health centre or rehabilitation centres.

The Committee observed that:

Little effort has been put into research about the cause of Nodding Disease
Syndrome, 18 years after it was first discovered in Northern Uganda.

There is widespread misconception about the cause of Nodding Disease

Syndrome and how it is spread. While some think that it is a natural
cause) others are of the view that it is an effect of the war. This has
affected the way the community treats the victims, how families care for
them and the perception towards the Government.
 mass sensitisation disease
by the district village health
teams. This will reduce stigma and enable the affected families
manage the syndrome better.

1.2 Effect on families

The Committee was informed that although the disease is treatable, some
parents think that their children will never recover. Mothers are more involved
in looking after the victims. Some parents abandon the children, tether them
on trees, lock them up with domestic animals or inject them with drugs to keep
them under control. This is done to enable the parents get time to engage in
economic activities like farming, carry out household chores and handle social
engagements. Tethering the children or locking them up with animals
tantamounts to violation of their rights. The children's movements are
controlled in that unpleasant manner because of the fear that if left unattended
to, they may wander off and disappear forever, fall in fire or drown in water
sources. The parents need ox-ploughs to help them cultivate the gardens so
that they can have more time to look after the victims.

Families have broken up due to Nodding Disease Syndrome, leaving the burden
of caring for the victims to one parent. The parents are eager to prove that their
children are functioning well sexually. So, the children are also giving birth.
Sometimes, the girls are defiled or raped. This increases the burden on the
care-takers who have to care for the victims as well as the victims' children.

Looking after children affected by Nodding Disease Syndrome is a full-time

job) making the parent unable to fulfil other duties and responsibilities;
The Committee was informed that in Pader District, a taskforce was formed to
provide additional support for management of the syndrome. The taskforce
meets regularly and comprises the Resident District Commissioner, District
Internal Security Officer, District Police Commander and Probation Officer.
There are two vans at the district which are used to transport victims to the
temporary treatment centre at Atar:3~C III. -

Kitgum Hospital has a ward which caters for victims of Nodding Disease
Syndrome while Gulu Hospital has a mobile team which moves to Awere centre
in Pader and Odek in Omoro providing health care for the sick children.

However, drug supplies are limited, yet the victims have to take medication
(kabamepazine tablets) daily. Due to the shortage of drugs and food, the
victims usually get convulsions. The drugs work effectively if the victim is well
fed. At Tumangu, medical personnel have fled the Health Centre II because of
insecurity in the area.

Music, dance and drama (MDD) is a form of therapy which, when combined
with medication and good feeding helps the victims recover faster. At Odek
Rehabilitation Centre, MDD is one of the forms of rehabilitation therapy.

The Committee observed that:

Treatment of Nodding Disease Syndrome requires a complete health care

package which includes medical and nutritional therapy) physiotherapy)
full-time attendants and properly functioning health care system) all of
which are in short supply in the region.


TntJ[aean essential
supplied mE~a1~caa facilities the 'fii"IDII'"II'II<f'll,'lll'll

Police station
at the

Given the inadequate Government involvement in the management of Nodding

Disease Syndrome, development partners like Hope for Humans and Caritas
have championed the fight against the syndrome.

Dr Suzanne Gazda of the Centre for Disease Control in the US, through charity
organisation, Hope for Humans, constructed Tumangu Rehabilitation Centre in
Kitgum at Shs 200 million in 2015. Unfortunately, the rehabilitation centre has
never been put to use due to lack of medical equipment and staff. The
rehabilitation centre has an admission ward, staff quarters and a classroom
block. There is one field nurse who conducts outreach monitoring of families
who have victims of Nodding Disease Syndrome. To date, 190 children have
been registered at the centre. However, many victims cannot reach the centre
because it is very far away from where they stay. Occasionally, the centre
receives donations like sports bicycles and wheelchairs from well-wishers. The
Church of Latter Day Saints donated 3,445 tins of supplements to Tumangu
and they were consumed in 6 months.

At Odek in Omoro district, there is a fully functioning rehabilitation centre for

_~severely affected children. It was also donated by Dr Suzanne Gazda who pays
~ .....__.. . . the 19 staff and two full-time nurses who sleep with the children and provide
full-time services. Dr Gazda also provides the medication for the children and
the food supplements. Unfortunately, the donor has run out of funds and is
about to withdraw her support any time.
5
The centre started operations as a day care centre in 20 12 with 40 children.
The children are usually brought at the beginning of the year. It caters for 40
children annually; 36 are residents while 4 are non-residents. In addition to
the 40 children, every month, the centre provides outreach medication to 500
children from the surrounding districts. After rehabilitation, the children are
reintegrated into the community. Before re-integration, the children undergo a
special needs education programme.

The two rehabilitation centres at Tumangu and Odek are privately-owned

which poses a risk to the beneficiaries if the donors decide to pull out.
The centres are also operating below capacity yet many victims of the
syndrome have not received medication.

Government should take over operation management the

rehabilitation centres victims Nodding Disease Syndrome.

Government, the Ministry Health, should construct a

-lrfllllnl...,....... since it has the highest number

victims.

6.0 CONCLUSION

Although Nodding Disease Syndrome is treatable, a lot needs to be done in

order to enable the victims recover. The primary responsibility rests with the
Government not development partners who have taken a lead in management
of the syndrome. Due to Nadding Disease Syndrome, the social-economic
development of the Northern region is affected.
1. Hon. Margaret Komuhangi

2. Hon. Atim Anywar Beatrice

3. Hon. Achia Terence Naco

4. Hon. Asamo Hellen Grace

5. Hon. Kesande Grace Bataringaya

6. Hon. Babirye Judith

7. Hon. Kitatta Aboud

8. Hon. Mugeni Milly

9. Hon. Mwine Mpaka

10. Hon. Okabe Patrick

11. Hon. Osoru Mourine

12. Hon. Achen Christine Ayo

13. Hon. Arinaitwe Rwakajara

14. Hon. Kaudha Grace Hailat

15. Hon. Ndeezi Alex

16. Hon. Najjuma Sarah

17. Hon. Capt. Evarlyne Asiimwe

18. Hon. Anywarach Joshua Carter

19. Hon. Achiro Lucy Otim

20. Hon. Wekomba Sarah

21. Hon. Akello Lucy

22. Hon. Mbaju Jackson

23. Hon. Nokrach William