Ronan Kelly
Retired 2020
Links to previous outbreaks recorded on FT;
http://www.flutrackers.com/forum/showthread.php?t=120674
http://www.flutrackers.com/forum/showthread.php?t=156891
http://www.flutrackers.com/forum/showthread.php?t=137116
http://www.flutrackers.com/forum/showthread.php?t=121591
From ProMED;
http://eafr.promedmail.org/direct.php?id=20110608.223334
Published Date: 2011-06-08 15:50:57
Subject
RO/EAFR> Nodding disease - Uganda: (Pader)
Archive Number: 20110608.223334
NODDING DISEASE - UGANDA: (PADER)
*********************************
A ProMED-mail post
http://www.promedmail.org
ProMED-mail is a program of the
International Society for Infectious Diseases
http://www.isid.org
Date: May 2011
Source: Global Health, Frontline News [edited]
http://www.ghfn.org/CustomContentRetrieve.aspx?ID=3938890
Nodding disease baffles experts
-------------------------------
Here in a hot, dusty part of northern Uganda, children are falling victim to a mysterious disease that has confounded health officials.
It's known loosely as "nodding disease" and almost every family in the village we've come to see in Pader District has at least one child suffering from it. A 9-year-old girl began showing symptoms on the day we arrived.
The disease gets its name from its most noticeable symptom. The young girl appears to be nodding off. Her eyes begin to close and her head drifts downwards as if she's falling asleep, yet she's not tired and doesn't want to lose focus.
Every few seconds her head jolts upwards and her startled gaze is upon us, then the eyelids become heavy and she fades again. Over time, she will likely get much worse, falling down and injuring herself, losing cognitive ability, and experiencing stunted growth.
School often becomes too difficult for many children with nodding disease and they drop out. Indeed many of them die young.
They can fall into cooking fires when losing consciousness. Drown during a seizure. Die of opportunistic infections that strike the malnourished. Or they may simply be abandoned by their families.
"Within the communities some of the parents have thrown their children onto the streets," says Dr Emmanuel Tenywa, the World Health Organization's team leader in the area. "They say they are tired. For how long will they be looking after these children? If you have seen these cases in their homes, you would cry when you look at them."
When the [newly affected girl] recovers from the nodding bout, she's able to fetch water, but she must be watched closely. Her mother weeps behind a nearby tree, distraught because she has only 2 children, and now, both of them have the condition.
William Oyet, a government health officer in the district, says this family's case is typical. "It can start anywhere, and all the people in the village are worried because any time, any day, your kid will start nodding."
Experts from the World Health Organization and the Centers for Disease Control and Prevention in Atlanta have been trying to find the cause of this condition. So far they've come up empty-handed.
Dr Scott Dowell, from the CDC's Division of Global Disease Detection and Emergency Response, led an investigation in the area. He says they're not only baffled by the cause of the disease. They can't determine why it only preys on children. "It really is very tightly clustered between 5 and 15 years of age," he says. "In the study we did in northern Uganda 93 percent of kids were in that age window and I don't know why that is."
Throughout the village, some parents of the children are desperate.
As cruel as it seems, one mother keeps her son, tied at the ankle with a rope so he can't wander off. He first showed symptoms of nodding disease in 2003. He's 15 years old now, but looks much younger. He spends most of his days, angry and confused, tethered to a post in his family's hut.
Since he became afflicted with the condition, he has developed a mental disability. He hasn't spoken clearly for 2 years. Some villagers are frightened by him and consider him dangerous.
And these dangers, and fears, are in evidence almost everywhere you turn in the village.
William Oyet, the local health official, shows us 2 more children who appear to be about 6 or 7 years old. "One of the children is 13 years old and when you look she has stunted growth and cannot go to school, cannot do anything."
The other child wears only a pair of faded shorts. His face and distended belly are covered in saliva. "He's 11 years old," says Oyet. "When you see the syndrome it has affected the growth. He cannot do much. The head, the saliva is all over the body and he's really malnourished."
Indeed many of the affected children are malnourished because eating food seems to spark bouts of nodding and sometimes seizures. Epilepsy drugs have been used to control the episodes, but they do not cure the condition, for which the key question is: what's causing it?
"I wish we knew. It's really frustrating," says the CDC's Dowell. "We know now from the most recent investigation that it is a brain disease. There's clearly something wrong with the brains of these kids who have it. We've documented by MRI scans that the brains have some atrophy and by EEG that the brain waves are abnormal. In fact some of the kids with nodding have almost continuous seizure activity although they appear fairly normal."
But the elusive question remains. "We understand the path of physiology of nodding but we still don't know what causes it," says Dowell.
The WHO's Dr Emmanuel Tenywa says there are other clues. For example, he says all the affected children have onchocerciasis, a parasitic condition that can cause blindness.
"I think that gives us a bit of a starting point," says Tenywa. "But the whole issue is now if you are infected with onchocerciasis, how does it cross the brain barrier to go into the brain, and what damage does it exactly do" These are the things which we are trying to understand.?
But onchocerciasis is common in many African countries, so why doesn't nodding disease appear elsewhere? So far it's only been found in small pockets of northern Uganda, Sudan, and Tanzania, but the number of cases is growing. That's raising fears that it could spread to more areas, sparking a greater sense of urgency in the health community.
But for the people in this village in northern Uganda, the sense of urgency couldn't be any greater. To them it's not a medical mystery. It's a blight that's picking off their children, one by one.
-- Communicated by: ProMED-EAFR
[Nodding disease appears to be an emerging and novel epileptic disorder whose etiology is still under investigation. The bouts of nodding as indicated in this report seem to be triggered by the sight of or eating food. This therefore means that most of the affected victims are unable to complete a meal, hence in the long run, malnutrition develops, and without treatment there is progressive cognitive decline and mental retardation.
Similar cases have been reported in Tanzania (Aall, 1962 and Winkler, 2008), Western Uganda (2000), and Southern Sudan (Lacey, 2003) largely in areas that are endemic for onchocerciasis.
It is likely that investigations into the etiology of the disease may take quite some time but it is critical that response measures are initiated alongside the investigations to improve that quality of life of affected children and their families. Given the issues highlighted in this report it would be critical to ensure that the patients have access to antiepileptics as part of chronic care that is provided to anyone affected by epilepsy; nutritional rehabilitation programs to address the malnutrition; bi-annual mass treatment with ivermectin of communities where rapid epidemiological mapping has proven high onchocerciasis endemicity; and psychosocial support to the affected children and their families as well as support to ensure that affected children do not drop out of school.
References ---------- 1. Aall L: Epilepsy in Tanganyika. 1962. Review and Newsletter -- Transcultural Research in Mental Health Problems 13: 54-7. 2. Winkler AS, Friedrich K, Konig R, et al: The Head Nodding Syndrome -- Clinical Classification and possible causes. Epilepsia 2008; 49(12): 2008-15; available at http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2008.01671.x/pdf. 3. Kaiser C, Benninger C, Asaba G, et al: Clinical and electro-clinical classification of epileptic seizures in West-Uganda. Bull Soc Pathol Exot 2000. 93(4): 255-9; available at http://www.pathexo.fr/documents/articles-bull/T93-4-2123-NT4.pdf. 4. Lacey M: Nodding disease: mystery of southern Sudan. Lancet Neurol 2(12): 714.
The HealthMap/ProMED-mail interactive map of Uganda can be seen at http://healthmap.org/r/0Yfn. Pader district in northern Uganda can be located on the map at http://molg.go.ug/Content/images/uganda_2010.gif. - Mod.JFW]
See Also
2009
----
Nodding disease - Uganda (03): (Kitgum) 20091217.204292
Nodding Disease - Uganda: (Kitgum) 20090819.201333
Nodding disease - Uganda (02): (Kitgum) comment 20090827.201488]
[For additional background information on nodding disease from the
general ProMED-mail list, the postings below can be found at
http://www.promedmail.org. - Mod.JFW]
[2009
----
Undiagnosed cerebral disease - Uganda: (TG) nodding disease 20090820.2952
2005
----
Cysticercosis - South Africa (Eastern Cape) (03) 20050521.1407
Cysticercosis - South Africa (Eastern Cape) (02) 20050508.1270
Cysticercosis - South Africa (Eastern Cape) 20050506.1254
2003
----
Undiagnosed cerebral disease, children - Sudan (02) 20030925.2423
Undiagnosed cerebral disease, children - Sudan 20030924.2417]
...................................jfw/mj/be
http://www.flutrackers.com/forum/showthread.php?t=120674
http://www.flutrackers.com/forum/showthread.php?t=156891
http://www.flutrackers.com/forum/showthread.php?t=137116
http://www.flutrackers.com/forum/showthread.php?t=121591
From ProMED;
http://eafr.promedmail.org/direct.php?id=20110608.223334
Published Date: 2011-06-08 15:50:57
Subject
RO/EAFR> Nodding disease - Uganda: (Pader) Archive Number: 20110608.223334
NODDING DISEASE - UGANDA: (PADER)
*********************************
A ProMED-mail post
http://www.promedmail.org
ProMED-mail is a program of the
International Society for Infectious Diseases
http://www.isid.org
Date: May 2011
Source: Global Health, Frontline News [edited]
http://www.ghfn.org/CustomContentRetrieve.aspx?ID=3938890
Nodding disease baffles experts
-------------------------------
Here in a hot, dusty part of northern Uganda, children are falling victim to a mysterious disease that has confounded health officials.
It's known loosely as "nodding disease" and almost every family in the village we've come to see in Pader District has at least one child suffering from it. A 9-year-old girl began showing symptoms on the day we arrived.
The disease gets its name from its most noticeable symptom. The young girl appears to be nodding off. Her eyes begin to close and her head drifts downwards as if she's falling asleep, yet she's not tired and doesn't want to lose focus.
Every few seconds her head jolts upwards and her startled gaze is upon us, then the eyelids become heavy and she fades again. Over time, she will likely get much worse, falling down and injuring herself, losing cognitive ability, and experiencing stunted growth.
School often becomes too difficult for many children with nodding disease and they drop out. Indeed many of them die young.
They can fall into cooking fires when losing consciousness. Drown during a seizure. Die of opportunistic infections that strike the malnourished. Or they may simply be abandoned by their families.
"Within the communities some of the parents have thrown their children onto the streets," says Dr Emmanuel Tenywa, the World Health Organization's team leader in the area. "They say they are tired. For how long will they be looking after these children? If you have seen these cases in their homes, you would cry when you look at them."
When the [newly affected girl] recovers from the nodding bout, she's able to fetch water, but she must be watched closely. Her mother weeps behind a nearby tree, distraught because she has only 2 children, and now, both of them have the condition.
William Oyet, a government health officer in the district, says this family's case is typical. "It can start anywhere, and all the people in the village are worried because any time, any day, your kid will start nodding."
Experts from the World Health Organization and the Centers for Disease Control and Prevention in Atlanta have been trying to find the cause of this condition. So far they've come up empty-handed.
Dr Scott Dowell, from the CDC's Division of Global Disease Detection and Emergency Response, led an investigation in the area. He says they're not only baffled by the cause of the disease. They can't determine why it only preys on children. "It really is very tightly clustered between 5 and 15 years of age," he says. "In the study we did in northern Uganda 93 percent of kids were in that age window and I don't know why that is."
Throughout the village, some parents of the children are desperate.
As cruel as it seems, one mother keeps her son, tied at the ankle with a rope so he can't wander off. He first showed symptoms of nodding disease in 2003. He's 15 years old now, but looks much younger. He spends most of his days, angry and confused, tethered to a post in his family's hut.
Since he became afflicted with the condition, he has developed a mental disability. He hasn't spoken clearly for 2 years. Some villagers are frightened by him and consider him dangerous.
And these dangers, and fears, are in evidence almost everywhere you turn in the village.
William Oyet, the local health official, shows us 2 more children who appear to be about 6 or 7 years old. "One of the children is 13 years old and when you look she has stunted growth and cannot go to school, cannot do anything."
The other child wears only a pair of faded shorts. His face and distended belly are covered in saliva. "He's 11 years old," says Oyet. "When you see the syndrome it has affected the growth. He cannot do much. The head, the saliva is all over the body and he's really malnourished."
Indeed many of the affected children are malnourished because eating food seems to spark bouts of nodding and sometimes seizures. Epilepsy drugs have been used to control the episodes, but they do not cure the condition, for which the key question is: what's causing it?
"I wish we knew. It's really frustrating," says the CDC's Dowell. "We know now from the most recent investigation that it is a brain disease. There's clearly something wrong with the brains of these kids who have it. We've documented by MRI scans that the brains have some atrophy and by EEG that the brain waves are abnormal. In fact some of the kids with nodding have almost continuous seizure activity although they appear fairly normal."
But the elusive question remains. "We understand the path of physiology of nodding but we still don't know what causes it," says Dowell.
The WHO's Dr Emmanuel Tenywa says there are other clues. For example, he says all the affected children have onchocerciasis, a parasitic condition that can cause blindness.
"I think that gives us a bit of a starting point," says Tenywa. "But the whole issue is now if you are infected with onchocerciasis, how does it cross the brain barrier to go into the brain, and what damage does it exactly do" These are the things which we are trying to understand.?
But onchocerciasis is common in many African countries, so why doesn't nodding disease appear elsewhere? So far it's only been found in small pockets of northern Uganda, Sudan, and Tanzania, but the number of cases is growing. That's raising fears that it could spread to more areas, sparking a greater sense of urgency in the health community.
But for the people in this village in northern Uganda, the sense of urgency couldn't be any greater. To them it's not a medical mystery. It's a blight that's picking off their children, one by one.
-- Communicated by: ProMED-EAFR
[Nodding disease appears to be an emerging and novel epileptic disorder whose etiology is still under investigation. The bouts of nodding as indicated in this report seem to be triggered by the sight of or eating food. This therefore means that most of the affected victims are unable to complete a meal, hence in the long run, malnutrition develops, and without treatment there is progressive cognitive decline and mental retardation.
Similar cases have been reported in Tanzania (Aall, 1962 and Winkler, 2008), Western Uganda (2000), and Southern Sudan (Lacey, 2003) largely in areas that are endemic for onchocerciasis.
It is likely that investigations into the etiology of the disease may take quite some time but it is critical that response measures are initiated alongside the investigations to improve that quality of life of affected children and their families. Given the issues highlighted in this report it would be critical to ensure that the patients have access to antiepileptics as part of chronic care that is provided to anyone affected by epilepsy; nutritional rehabilitation programs to address the malnutrition; bi-annual mass treatment with ivermectin of communities where rapid epidemiological mapping has proven high onchocerciasis endemicity; and psychosocial support to the affected children and their families as well as support to ensure that affected children do not drop out of school.
References ---------- 1. Aall L: Epilepsy in Tanganyika. 1962. Review and Newsletter -- Transcultural Research in Mental Health Problems 13: 54-7. 2. Winkler AS, Friedrich K, Konig R, et al: The Head Nodding Syndrome -- Clinical Classification and possible causes. Epilepsia 2008; 49(12): 2008-15; available at http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2008.01671.x/pdf. 3. Kaiser C, Benninger C, Asaba G, et al: Clinical and electro-clinical classification of epileptic seizures in West-Uganda. Bull Soc Pathol Exot 2000. 93(4): 255-9; available at http://www.pathexo.fr/documents/articles-bull/T93-4-2123-NT4.pdf. 4. Lacey M: Nodding disease: mystery of southern Sudan. Lancet Neurol 2(12): 714.
The HealthMap/ProMED-mail interactive map of Uganda can be seen at http://healthmap.org/r/0Yfn. Pader district in northern Uganda can be located on the map at http://molg.go.ug/Content/images/uganda_2010.gif. - Mod.JFW]
See Also
2009
----
Nodding disease - Uganda (03): (Kitgum) 20091217.204292
Nodding Disease - Uganda: (Kitgum) 20090819.201333
Nodding disease - Uganda (02): (Kitgum) comment 20090827.201488]
[For additional background information on nodding disease from the
general ProMED-mail list, the postings below can be found at
http://www.promedmail.org. - Mod.JFW]
[2009
----
Undiagnosed cerebral disease - Uganda: (TG) nodding disease 20090820.2952
2005
----
Cysticercosis - South Africa (Eastern Cape) (03) 20050521.1407
Cysticercosis - South Africa (Eastern Cape) (02) 20050508.1270
Cysticercosis - South Africa (Eastern Cape) 20050506.1254
2003
----
Undiagnosed cerebral disease, children - Sudan (02) 20030925.2423
Undiagnosed cerebral disease, children - Sudan 20030924.2417]
...................................jfw/mj/be