Families of Nodding Disease Patients Need Counselling Too

There is need to provide effective counseling for families with members suffering from mental health ailments such as the nodding syndrome.

Audio 2

There is need to provide effective counselling for families with members suffering from mental health ailments such as the nodding syndrome.


Dr. Byama Mutamba, a psychiatrist at the National Metal Health Referral Hospital Butabika, attributes symptoms associated with the nodding syndrome to a psychiatric condition.


Although the cause of the nodding syndrome is still under investigation, Dr. Mutamba explains that common characteristics include stunted physical and mental growth, severe nodding or epileptic-like seizures or frozen motion.


 He says the patients tend to experience these symptoms when they are eating or feeling cold.


Dr. Mutamba who is researching on the nodding syndrome says that a deeper understanding of the psychological effects of mental health illness on families will help care-givers within family settings.


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The nodding syndrome first occurred among children in Northern Uganda aged between 5 to 15 years. It was first reported to the Ministry of Health (MOH) in 2009.


A report from the MOH however showed that the syndrome had been endemic in the districts of Kitgum, Pader and Lamwo since 2005 with about 300 children were affected.


By 2012, it was estimated that about 3,094 cases existed in Northern Uganda and 170 deaths have been reported since 2005.


Dr. Mutamba noted that dealing with a distressing disease like the nodding syndrome, could result in mental challenges for both the care giver and the patient.


He is currently engaged in sensitizing mental health care workers to provide effective counselling to families with members suffering from mental health ailments.


He says that although the nodding syndrome is not infectious dealing with the distress that the nodding syndromes presents can be have adverse effects on the families.


His work has  is part of the 59 health innovations devised in 13 low- and middle-income countries which will share $10.9 million Canadian dollar grants from the Grand Challenges Canada.


 Speaking to URN on phone Dr. Kenneth Simiyu of the Grand Challenges Canada said that each project will receive 100,000 Canadian dollars, to support local innovations aimed at reducing impact of devastating diseases.


Dr. Paul Bukoloki, Researcher and Lecturer at the School of Social at Makerere University, explains that care givers of patients with the nodding syndrome have been known to use physical restraints like tying them on trees. He said that children with the syndrome should be encouraged to return to school.


While Dr. Sheila Ndyanabangi, Principal Medical Officer, Mental Health and Control of Substance Abuse at the Ministry of Health, advises that through support groups patients with psychiatric conditions can be helped to adhere to medication and deal with stigma and discrimination.


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The syndrome has also been associated with stigma, thus causing exclusion of the affected families from the society.