DOENÇA MISTERIOSA – MYSTERY DISEASE

DOENÇA MISTERIOSA – MYSTERY DISEASE

 

Doença misteriosa assola o norte da Uganda

Por Bernardo Staut em 7.03.2012 as 13:41

Na maioria das manhãs, Michael Odongkara leva sua filha, Nancy Lamwaka, para fora e amarra seu tornozelo em uma árvore.

Não é algo que ele gosta de fazer. Mas a doença que leva a criança de 12 anos a ter ataques violentos já afetou tanto sua capacidade mental que ela não consegue se controlar e geralmente acaba indo para longe. Uma vez, ela ficou perdida entre arbustos por três dias.

“Dói muito amarrar minha filha em uma árvore… Mas é porque quero salvar sua vida, sou forçado a isso. Não quero que ela se perca e morra em uma queimada, ou se afogue nos pântanos próximos”, comenta.

Lamwaka sofre de uma síndrome com origem desconhecida e sem cura. As autoridades da Uganda estimam que a doença já afeta mais de três mil crianças do país.

A síndrome atinge pessoas entre cinco e 15 anos, e já matou mais de 200 em Uganda, nos últimos três anos. Milhares de crianças também sofrem dela no sul do Sudão.

Os efeitos, parecidos com um ataque epilético, geralmente são ativados ao ingerir comida, por isso aqueles com a síndrome ficam subnutridos e mentalmente e fisicamente abatidos.

“Existe um efeito geral no sistema neurológico, até a extensão que alguns podem ficar com a visão, a ingestão de comida e até a percepção imediata do ambiente debilitadas”, comenta Emmanuel Tenywa, da Organização da Saúde Global (OSG) em Uganda.

Enquanto o pai assiste sem poder fazer nada, Lamwaka chora e começa a convulsionar. Saliva começa a sair da boca enquanto o corpo inteiro entra em choque durante alguns minutos, até que ela finalmente cai na poeira. A menina tem episódios como esse até cinco vezes ao dia, desde os últimos oito anos, e sua saúde está muito debilitada. “Quando ela falava, ela pedia comida”, afirma o pai. “Mas agora ela apenas estica a mão implorando por comida”.

Poque isso acontece

A síndrome (nos Estados Unidos chamada de “nodding syndrome”, ou “síndrome do cumprimento”, devido ao movimento da cabeça durante as convulsões) foi primeiramente documenta na Tanzânia, em 1962. Cinquenta anos depois, os pesquisadores ainda não sabem o que ela é.

“Nós temos uma longa lista de coisas que não estão causando a doença. Nós ainda não temos uma causa definitiva”, afirma o médico Scott Dowell. “Nós delimitamos, através de estudos de campo e testes de laboratório, mais de três causas hipotéticas possíveis, incluindo 18 famílias de vírus com centenas de membros”, comenta.

Apesar de não haver razões para acreditar que a doença irá se espalhar, os pesquisadores nunca podem ter certeza. Dowell cita a “doença da magreza”, que emergiu na África na década de 80 e acabou se tornando o começo da AIDS.

Possíveis causadores

Os pesquisadores têm ideias de causadores da doença: um é uma possível ligação entre o parasita que causa a cegueira dos rios, ou oncocercose.

“Todos esses casos aconteceram em áreas onde a oncocercose existe, por isso pensamos que existe uma relação grande entre os dois”, afirma Tenywa.

Os pesquisadores planejam fazer testes genéticos em amostras de pele das crianças para estabelecer a ligação. “Nas próximas semanas tentaremos entender se o parasita é uma variante da oncocercose ou se apenas parece isso”, comenta Dowell.

Os médicos também observaram uma deficiência de vitamina B6 nas populações onde a doença prevalece.

Enquanto a causa da doença permanece desconhecida, as autoridades estão focando no tratamento dos sintomas. Um teste, que deve começar em maio, vai testar dois anticonvulsionantes, assim como suplementos de vitamina B6. Algumas crianças afetadas já estão tomando medicamentos antiepiléticos, com graus variados de efetividade.

“Penso que todos concordam que nesse estágio é interessante termos uma ideia melhor de quais tratamentos estão funcionando e se algum deles é perigoso”, comenta Dowell.

Os pesquisadores esperam um protocolo ser aprovado na Uganda e nos Estados Unidos para teste, que vai incluir 80 crianças.

Amargor

Mas para aqueles que estão vivendo com a doença e seus efeitos, tudo parece se mover muito lentamente. Em Uganda, a frustração com o governo está crescendo.

“As pessoas estão muito amargas e pensam que o governo as abandonou”, comenta Martin Ojara, coordenador do conselho de Acholi, uma sub-região de Uganda onde a síndrome está mais concentrada.

Apesar do governo ter recentemente anunciado um plano para estabilizar centros de tratamento e trazer trabalhadores da saúde, alguns dizem que é um pouco tarde.

Um pedido de cerca de R$ 2,6 milhões, feito pelo Ministério da Saúde da Uganda, para combater a doença, não foi incluso na receita submetida para a aprovação do parlamento. O ministro das finanças, que considerou o pedido tardio, instruiu as autoridades da saúde a realocar os fundos que já existem até o próximo orçamento.

O governo sustenta que tem procurado a causa e o tratamento para a doença desde que ela apareceu. “Houve muitas tentativas, desde 2009, para saber qual é o problema e como pode ser solucionado”, comenta Musa Ecweru, responsável pela parte de desastres e emergências no escritório do primeiro ministro.

“Todos sabem que o governo não ficou de braços cruzados. Temos feito de tudo para garantir que vamos superar essa situação”, comenta.

“As crianças (com a síndrome) não podem ir para a escola e não possuem futuro”, comenta Anywar. “Os pais dessas crianças doentes estão traumatizados por uma doença desconhecida, e literalmente perderam a esperança”.

Pegando fogo

Crianças com a síndrome estão mais sujeitas a acidentes como afogamento e incêndios, devido aos problemas mentais, e muitas das fatalidades são resultados dessas causas secundárias.

Desde que contraiu a doença, Lamwaka já passou por muitos incidentes. Seu corpo está cheio de machucados de quedas, e existem manchas rosas em suas mãos, pois caiu recentemente no fogo, quando ambos os pais estavam longe.

“Ela não sabe que está pegando fogo, que ela vai queimar até que alguém chegue e tire ela de lá”, comenta seu pai.

Ele admite que parou de levá-la ao médico. “Mesmo que eles nos dêem remédios, eu não acho que isso vai ajudar”, afirma Odongkara.

Sentada em uma sombra próxima está sua mãe, Jujupina Ataro, de 72 anos. Ela tem três netos com a doença e passa boa parte do tempo dando banho, alimentando-as, e até limpando suas fezes, já que as crianças não conseguem mais usar o banheiro.

Ela diz que muitos de seus vizinhos e amigos também têm crianças com a síndrome. “Eu conheço tantos nessa região. Se um médico aparecesse você veria quantos existem… É incontável”, comenta. “É como se a geração estivesse afetada”. [Reuters]

Fonte: http://hypescience.com/doenca-misteriosa-assola-o-norte-da-uganda/

 

Mystery disease devastates northern Uganda

 

Nancy Lamwaka, 12, who is suffering from nodding syndrome, sits out in the open in Lapul, Pader district, 300 km (186 miles) north of Uganda's capital of Kampala, February 8, 2012. Nodding syndrome, which mostly affects children under 15, was first documented in Tanzania as early as 1962. However, despite extensive investigations, researchers are still largely confounded by it. Most of the fatalities attributed to the disease are the result of secondary causes. Children with nodding syndrome are prone to accidents such as drowning and burning.  REUTERS-Edward Echwalu
Children suffering from nodding syndrome gather in Akoya-Lamin Omony village in Gulu district, 384 km (238 miles) north of Uganda's capital of Kampala, February 19, 2012. Nodding syndrome, which mostly affects children under 15, was first documented in Tanzania as early as 1962. However, despite extensive investigations, researchers are still largely confounded by it. Most of the fatalities attributed to the disease are the result of secondary causes. Children with nodding syndrome are prone to accidents such as drowning and burning. Picture taken February 19, 2012. REUTERS-James Akena
Michael Odongkara walks out of a house with his daughter Nancy Lamwaka, who is suffering from nodding syndrome, in Pader district, 300 km (186 miles) north of Uganda's capital of Kampala, February 8, 2012. Nodding syndrome, which mostly affects children under 15, was first documented in Tanzania as early as 1962. However, despite extensive investigations, researchers are still largely confounded by it. Most of the fatalities attributed to the disease are the result of secondary causes. Children with nodding syndrome are prone to accidents such as drowning and burning. Picture taken February 8, 2012. REUTERS-Edward Echwalu

By Jocelyn Edwards

PADER DISTRICT, Uganda | Tue Mar 6, 2012 1:13pm EST

(Reuters) – Most mornings, Michael Odongkara takes his daughter Nancy Lamwaka outside and ties her ankle to a mango tree.

It’s not something he likes to do. But the disease that gives the 12-year-old violent seizures has so diminished her mental capacity that she no longer talks and often wanders off. Once, she was lost in the bush for three days.

“It hurts me so much to tie my own daughter to a tree … but because I want to save her life, I am forced to. I don’t want her to (get) loose and die in a fire, or walk and get lost in the bushes, or even drown in the nearby swamps,” he said.

Lamwaka suffers from nodding syndrome, a disease of unknown origins and no known cure, which Ugandan authorities estimate affects more than 3,000 children in the country.

Named after its seizure-like episodes of head nodding, the disease, which mostly affects children between five and 15, has killed more than 200 children in Uganda in the past three years. Thousands of children in South Sudan are also sufferers.

As the seizures are often triggered by food, children who have nodding syndrome become undernourished and mentally and physically stunted.

“There is a general effect on their neurological system to the extent that some can be impaired in vision, eating and even mere recognition of their immediate environment,” said Dr. Emmanuel Tenywa, a country advisor in disease control for the World Health Organization (WHO) in Uganda.

As her father watched helplessly from under a nearby tree, Lamwaka cried out and began to convulse. Saliva flowed from her mouth and her whole body shook for a few minutes until she finally went limp in the dust. Lamwaka has had episodes like this up to five times a day for the past eight years, and her health has steadily deteriorated.

“When she was talking she would ask for food,” he said. “These days she just stretches out her hand begging for it.”

WHY DOES IT HAPPEN?

Nodding syndrome was first documented in Tanzania as early as 1962. Fifty years later, researchers still don’t know what it is.

“We have a long list of things that are not causing nodding disease. We still don’t have a definitive cause,” said Dr. Scott Dowell, director of the division of global disease detection and emergency response of the Centers for Disease Control (CDC).

Officials from the Atlanta, Georgia-based CDC were in Uganda for nine days in February on the latest of three trips to investigate the disease.

“We have ruled out, through our field studies and our laboratory testing, more than three different hypothesized causes including . . . 18 virus families with hundreds of members,” said Dowell.

It’s a relatively rare situation for the CDC to be in; of 600 outbreaks of illnesses investigated by the organization’s division of global disease detection, just six are unresolved.

Although they have no reason to believe the disease will spread, researchers can never be certain. Dowell cites “slim disease,” which emerged in West Africa in the 1980s and turned out to be the beginnings of AIDs.

POSSIBLE LEADS

The researchers do have some leads: one is a possible link with the black fly-borne parasite that causes river blindness, or onchocerciasis.

“All of these cases are reported in areas where there is onchocerciasis, so we strongly think there is a relationship between the two,” said Dr. Tenywa of the WHO.

Investigators say they plan to do genetic testing on skin samples taken from the children to try to establish a link.

“In the coming weeks we anticipate learning a lot more about whether this is a variant of onchocerciasis or whether it might be some other sort of parasite that looks like onchocerciasis,” said the CDC’s Dowell.

Researchers have also observed a deficiency of vitamin B6 in the populations where the disease is prevalent.

As long as the cause of the disease remains unknown, officials are focusing on treating its symptoms. CDC researchers met with Ugandan health officials to discuss how a trial of treatments would work.

The trial, which could begin as early as May, will test two types of anti-convulsants as well as vitamin B6 supplements. Some afflicted children are already on anti-epileptic drugs, with varying degrees of success.

“I think everybody is in agreement that at this stage it would be good to have a much better idea about what treatments are working and if any of them are harmful,” Dowell said.

Investigators say that they hope to have a protocol for the trial, which will include 80 children, ready to submit for ethics approval in Uganda and the United States in a couple of weeks.

BITTERNESS

But for those who have been living with the disease and its effects, it all seems to be moving very slowly. In Uganda, frustration over the government response is growing.

“People are very bitter and they think the government has abandoned them,” said Martin Ojara, local council coordinator for the Acholi sub-region in Uganda, which is where the disease is concentrated.

Though the government recently announced a plan to establish treatment centers and bring in health workers to address the disease, some say it’s too little, too late.

A request by the Health Ministry for 3.8 billion Ugandan Shillings (about $1.5 million) to fight the disease was not included in the supplementary budget recently submitted to parliament for approval. The finance ministry, which said the request was late, has instructed health authorities to reallocate funds from their existing budget until the next supplementary budget.

“It is very sad,” said Beatrice Anywar, an opposition member of parliament for one of the most affected areas. “It shows how the government really doesn’t care.”

The government maintains it has been seeking a cause and treatment for the disease since it first surfaced.

“There have been a lot of attempts, from 2009 to date, to get the riddle of this situation answered — what is the problem and how can it be addressed,” Musa Ecweru, the minister of state for disaster preparedness and emergency response in the prime minister’s office, told reporters in early March.

“Everybody knows that government has not just folded its hands. It has been doing all it takes to make sure that it will (get) on top of this situation,” he said.

Anywar and others have called for the area to be declared a disaster zone — in some villages in her district, almost every family has a child with nodding disease and some families even have several, she said.

“The children (with the disease) who are of school-going age cannot go to school and have no future,” said Anywar. “Food security is a problem because these parents are not productive.

“The parents of these sick children are traumatized by an unknown disease and literally have lost hope.”

ON FIRE

Children with nodding syndrome are prone to accidents such as drowning and burning because of mental impairment, and many of the fatalities from the disease are the result of these secondary causes.

Since she contracted the disease, Lamwaka has had many such incidents. Her body is covered with bruises from falling and there are raw, pink wounds on her hands from when she fell into the fire recently when both of her parents were away.

“She doesn’t know that she is on fire, that she is burning until someone comes and brings her away from the fire,” said her father.

He admits he has stopped taking her to the doctor.

“Even if they give us drugs, I’m not sure if the drugs will help,” said Odongkara.

Sitting in the shade nearby is his mother, Jujupina Ataro, 72. She has three grandchildren with the disease and spends her time bathing and feeding them, and even cleaning up their faces since they can no longer use the toilet by themselves.

She said many of her neighbors and friends also have children with the disease.

“I know so many in this area. If a doctor would come you would see how many people would turn up … it’s uncountable,” she said. “It’s like the generation is wiped out.”

(Editing by Sonya Hepinstall)

Fonte: http://www.reuters.com/article/2012/03/06/us-uganda-nodding-idUSTRE8250I320120306

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