Professional Documents
Culture Documents
DISEASE
SYNDROME
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.
3.0 OBJECTIVES
METHODOLOGY
In order to fulfil the above objectives, the following methods were used.
1 Meetings
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.
Little effort has been put into research about the cause of Nodding Disease
Syndrome, 18 years after it was first discovered in Northern Uganda.
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.
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.
TntJ[aean essential
supplied mE~a1~caa facilities the 'fii"IDII'"II'II<f'll,'lll'll
Police station
at the
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.
victims.
6.0 CONCLUSION