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PRESS STATEMENT ON THE PROGRESS ON NODDING SYNDROME INTERVENTIONS

MINISTRY OF HEALTH

13/05/2014

Ruhakana Rugunda (Dr)
Minister for Health.
                                  

PRESS STATEMENT ON THE LAUNCH OF

PRESS STATEMENT ON THE PROGRESS ON NODDING SYNROME INTERVENTIONS

In 2009, districts in the mid north were affected by a strange illness/disorder called Nodding Syndrome. This condition was characterised by nodding of the head, mental retardation and stunted growth.  Investigations attributed this illness to a number of causes including post traumatic stress disorder and Onchocerciasis among others.  
The disease was first detected in the three districts of Acholi sub-region namely; Kitgum, Pader and Lamwo.
A total of 3,000 cases had by 2009 been recorded in the three districts. However by 2011, cases were cited in Lira, Gulu and Oyam.
In 2011, the Ministry of Health launched a Ug.shs 3 billion Integrated Response Plan to manage and coordinate all interventions concerning the Nodding Syndrome. An inter-ministerial taskforce for control and management of Nodding syndrome was subsequently formed under the stewardship of the Office of the Prime Minister. Members  were drawn from; Ministry of Health, Ministry of Education and Sports, Ministry of Gender, labour and Social Development, Ministry of Agriculture, Animal Industry and Fisheries, Ministry of Finance, Planning and Economic Development, and the Directorate of Information. Other members were drawn from the World Health Organisation; US Centre for Disease Control, AFENET and other partners.  
In the plan, the Ministry of Health was mandated to ensure appropriate treatment and management of cases, provide psychosocial support to children and care takers, provide transport for patients, enhance nutrition of the sick, strengthen surveillance and conduct research into Nodding Syndrome.
In regard to the above roles, the Ministry of Health has registered great progress and wishes to share a report on this today.
Recorded cases of Nodding syndrome to-date:
Following the development of the clinical guidelines, cases were categorised as either nodding syndrome or epilepsy depending on the history and clinical presentation.
To date, 3,320 cases of nodding syndrome have been registered and treated compared to 5,185 cases of Epilepsy with the highest cases reported in Kitgum and Pader. The total number of cases that required admission from the seven Treatment centers was 321 and throughout this period 11 deaths were registered.
Of the 7 treatment centers established by the Ministry; Kitgum General Hospital managed a total of 1,321 cases followed by Atanga HCIII in Pader - 1,210, Palabekkal HC III in Lamwo – 349, Odek in Gulu – 333, Atiak in Gulu – 61, Aromo in Lira – 38 and otwal in Oyam – 8 cases.
District    Treatment center    Nodding syndrome    Epilepsy    Cumulative admission    Referrals    Deaths
Kitgum    Kitgum GH    1,321    2,073    148    4    4
Pader    Atanga HCIII    1,210    1,354    130    18    5
Lamwo    PalabekKal HCIII    349    113    38    0    0
Gulu    Odek HCIII    333    351    4    0    2
Amuru    Atiak HCIII    61    200    0    0    0
Lira    Aromo HCIII    38    234    1    0    0
Oyam    Otwal HCIII    8    860    0    0    0
Total        3,320    5,185    321    22    11
 Procurement and distribution of medicines;
The current management of nodding syndrome focused mainly on the control of convulsions and improvement of nutrition. Through the National Medical Stores, we have made available constant supplies of anticonvulsants – Sodium Valproate and Carbamazepine. The NMS has also been supplying Vitamin B Complex for supplementation as preliminary research data showed low levels in some of the cases of nodding syndrome.  This has had tremendous impact on the children with nodding syndrome and epilepsy with many of them showing a reduction in the numbers of seizures and improvement in their general wellbeing.
Surveillance; The Ministry of health intensified surveillance activities in all the affected districts. A total of 124 officers were trained in community surveillance to track and monitor all patients with Nodding Syndrome.  The team is beefed up with the district and National surveillance officers and reports on a monthly basis to the Ministry of health. Since the opening of the treatment centers in 2012, no new cases of nodding syndrome have been registered.
Control of Onchocerciasis; with support from partners like the World Health Organisation and the Carter Center, we continue to carry out a mass drug administration of Ivermectin in the affected districts on a bi- annual basis. Treatment Coverage has progressively improved from 33% in 2011 to 60% in Pader and Kitgum districts and as high as 90% in Gulu. The coverage in the rest of the districts varies between 60% and 70%.
With funding from the Government of Uganda, Ug. shs 1 billion, was used to conduct aerial spraying as a one off, along rivers Pager, Aswa and Agago. River dosing, however, has been continuous with commendable results. The procedure is such that the river is dosed on a weekly basis for three months, the process is then interrupted for a period of another three month and then its resumed again.  To date, 5 rounds have been applied and the communities report a marked reduction in the presence of the black flies. River dosing will continue until the black flies can no longer be detected.
Research; We carried out research in the following areas:
1.    Treatment outcomes of Nodding syndrome using sodium valproate:
2.    Disability study of nodding syndrome
3.    Beliefs, knowledge, perceived stigma and health seeking behaviours of the Acholi people;
4.    Autopsy study
5.    Genetic studies
Treatment outcomes of Nodding syndrome cases using sodium valproate:
484 Cases of nodding syndrome and 476 cases with convulsive epilepsies were assessed for clinical improvement and function 12 months after initiation of sodium valproate to control seizures. The research showed that this intervention resulted in marked improvement in symptoms and function compared to pre intervention state. 24.7% of the patients were seizure free and there was a reduction in seizure burden of greater than 70%. Abnormal behaviour had resolved in 59.3% and 40% of children had enrolled in school including 17% that had dropped out due to severe epilepsy. 80% of the patients had achieved independence in self care and 75% could assist their parents in home activities.
Disability study of nodding syndrome;
The following disabilities were found to be associated with nodding syndrome
Physical deformities - 45.5%
Speech difficulties - 27.3%
Visual impairment - 8%
Hearing impairment - 11.5%
Dental caries - 36.5%

Beliefs, knowledge, perceived stigma and health seeking behaviours of the Acholi people;
Preliminary results from this study show that the affected people believe that nodding syndrome is due to evil spirits of the dead who were not buried, chemical effects of the prolonged LRA war, and LRA crimes committed against the neighbouring communities
Many people do not want to associate with the affected because they believe that if you do, then the spirits may attack you too.
The people also believe that nodding syndrome does not respond to traditional and cultural interventions, but responds to modern medicine like sodium valproate.   
Autopsy Study
Five brain samples collected at various intervals from the several treatment centers were flown to Atlanta last month, April 2014, for analysis. Four were samples from nodding syndrome cases while one was from an epileptic case. Three of the four nodding cases were found to have identical lesions in the same region of the brain. The fourth nodding case did not present like the other three. The epileptic had no brain lesions at all. Further tests are ongoing to ascertain the cause of these lesions
Genetic studies
10 people from a nodding syndrome family were last Saturday flown to the National Institute of Health, (NIH) Washington to undergo genetic studies. The objective of this study is to help us understand whether there is a genetic basis as a cause for nodding syndrome and why it affects some and not all in a given family.
 In summary, the above interventions and research findings are a positive step in the management of nodding syndrome in the affected districts.
Finally, allow me to extend my appreciation to the following partners who have supported the above interventions; the World Health Organisation (WHO), US Center for Disease Control and Prevention (CDC), Makerere college of Health sciences, Makerere School of Public Health, Butabiika National Referral Hospital, implementing partners and the affected districts and families.  
The Ministry of Health once again reassures the public that it is committed to fully implementing the response plan to the benefit of the affected communities and continuing with research until a cause is found and a definitive treatment is identified.  
 FOR GOD AND MY COUNTRY

Ruhakana Rugunda  (Dr)
Minister for Health