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Support Nodding Disease victims; the most urgent challenge to a northern Uganda child

March 10, 2012

12 year old Nancy Lamwaka one the thousands of victims of LRA war but now tormented by a new disease.

Over the last few days I have received thousands of emails in response to the video I put out in response to KONY2012. Most of the emails were from grateful people who had learnt something from my video.  I am unable to read all the responses and reply you all at this time but your efforts are very much appreciated.

Most responses indicated they want to support the Ugandan child and be sure that the help goes to the right cause.

The cause

More than 3000 children in northern Uganda are currently battling a mysterious disease that has come to be known as nodding disease. Please read more from Wikipedia about Nodding Disease. There are so far 170 reported deaths.

In brief,  nodding disease is a mentally and physically disabling disease that only affects children between the ages of 5 and 15. Victims get seizures on the smell of food or when they get cold. Read more from previous blog

The World Health Organisation and Centre for Disease Control (CDC) have been working on research to establish the cause and how the disease is transmitted with no success so far.

Why we need to act fast:

With the healthcare system in northern Uganda wrecked by war and in a country where the right to healthcare is not guaranteed, most children suffering from this disease have been going through unbearable suffering. Parents are forced to painfully tie their children to trees.


I visited the Mulago National referral Hospital last week as part of women’s group to give a small hand to the caretakers of 25 children who were brought from northern Uganda to Kampala.

Women activists in Uganda this week tied themselves to trees to protest government slow response and the continued psychological torture mothers in northern Uganda are going through despite end of the war. The government has not yet released the 7 billion shillings needed to support the victims and families.

How to act:

Northern Uganda has great leaders who have been campaigning to get more funds and medical attention to the victims. Beatrice Anywar, the Woman Member of Parliament for Kitgum is one of the finest.

She’s not just a politician; the whole of Uganda knows her activism on corruption and environmental issues. Last year,  the US Mission in Uganda gave her the Woman of Courage Award for her work.

Anywar has been on radios and TVs calling for donations to help victims. I spoke to her this morning via phone from Kitgum in northern Uganda where she is meeting grassroots leaders, community health teams to look for ways to deal with those suffering from the disease.

More than 3000 children cannot go to school or access the available medical help to ease their suffering. If you want to donate to a cause and help out in reconstructing northern Uganda and bringing communities back to their feet please support Anywar and others battling nodding disease.

Contact MP Beatrice Anywar for more:

 Phone: +256 772 99 87 24

Email: anywarb@yahoo.co.uk

Visit her on Facebook and leave her a message:  Beatrice Atim

More images from the north on Echwalu’s Blog and a story of a tormented girl victim of nodding disease. Hashtag #NoddingDisease to raise awareness.

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24 Comments leave one →
  1. March 10, 2012 12:51 pm

    Finally Finally. A true Society “Watch dog” You are a star Rosebell. And Edward Echwalu would be a great fellow Journalist to work with after his expereince with a family is affceted by this disease. http://www.observer.ug/index.php?option=com_content&view=article&id=17173:nodding-horror-12-year-old-victim-is-tied-to-a-tree-for-13-hours-everyday&catid=78:topstories&Itemid=116

  2. echwaluphotography permalink
    March 10, 2012 1:43 pm

    A fantastic cause. Its high time the world started focusing on the most relevant and real time issues affecting children of northern Ugandan.

    Social media, will be very crucial in helping tell stories of helpless boys and girls being tormented by a disease which is yet to have a cure.

    Lets do this.

  3. Espen Haram permalink
    March 11, 2012 6:51 pm

    Hello Rosebell, I value your commitment. My name is Espen, and I`m from Norway. I`m very interested in, and concerned about, the “Nodding disease” afflicting so many children and their families i Uganda and elsewhere, and I am trying to collect more specific information on this disease since I would like to understand more. Although there are multiple possible causations, the symptoms do resemble those of severe mercury poisening. I would be very interested in information regarding toxologi reports and enviromental condition if you could provide it. Please contact me so we can exchange information about this subject.

    • rosebell permalink*
      March 13, 2012 3:08 pm

      Uganda media has done good job to cover the disease please find out more from Daily monitor and Observer. thanks

  4. Lil permalink
    March 11, 2012 6:59 pm

    Such a wonderful blog!! I just read this article in the NY Times and there are some odd similarities in the two cases of unexplained mass illness, this other case different (and in New York) but also is affecting children of the same age. http://www.nytimes.com/2012/03/11/magazine/teenage-girls-twitching-le-roy.html?hpw

  5. Dr Joseph permalink
    March 14, 2012 1:29 am

    Good blog. incisive thoughts. one question though- have you ever been caught up in a war zone and feared for your life?

  6. April 3, 2012 6:26 pm

    Hello there. I am a part of an NGO in India involved in the betterment of healthcare for Rural and Under-privileged citizens. I work with a group of people who have mastered Alternate Treatments for the more chronic diseases found in the current population. The core of this treatment deals with Human Neural System.

    We have been following the stories related to Nodding Disease. We strongly believe that we can help the children in Uganda who are suffering from this disease. I have been trying to contact different personnel in the various departments but have had no favorable response. We would like to sponsor a visit by some of these affected children to India for a short duration to see if they can be helped. We will take care of all the logistical issues related to their travel and stay in India.

    I am hoping to reach the office of Mrs. Beatrice Atim Anywar to see if we can work together and find a cure for this very troubling disease.

    • Tinah ssseru permalink
      December 2, 2012 11:34 am

      Mr. Srinivas Poluru,
      I know it has been a very long time. But i just come across this website while researching on nodding disease. I’m pursuing a course in public Health. Did you ever get any response regarding this issue?

  7. April 20, 2012 5:03 pm

    I am surprised to see no one respond to my request for contact with Health Officers. We are very confident that we can help but getting no response from WHO or the Ministry of Health.

  8. jall permalink
    April 26, 2012 8:04 pm

    @Srinivas Poluru, please do not waste time with the WHO, if they care enough they would have acted long time ago. They were told that nodding disease was spreading, they ignored the situation. Try connecting with Gulu university’s medical department and St. Mary Lacor hospital in Gulu. Time is running out for nodding disease victims. Please do what you can and may God bless you.

    • omuna simon -MAKERERE UNIVERSITY. permalink
      June 12, 2012 11:40 am

      According to some neurotoxicologist such as peter spencer and Andrew Winiser the first investigaters of the troubling nodding disease stated that the disease began spreading long time ago in areas of sudan and Tanzania(1960s), but today such areas are free from the disease. why can’t the government of uganda together with the WHO work in hand with government of those previousely affected countries to come up with the solution to the problem in nothern uganda since they dealt in their country other than depending on guess work on the causes of the disease.Srinivas Poluru please i hambly request you to take on action despite the deaf eyes the government and WHO have paid to you, God will reward you.

  9. Federica Nshemereirwe permalink
    July 17, 2012 12:26 pm

    MPs from Northern Uganda, and actually from the whole of Uganda have an obligation to table a health care bill in parliament, debate it and pass a law that would oblige government to provide the much needed healthcare services to all people. Nutrition and hygiene should also be ensured through enforceable laws and regulations. To enforce these laws and regulations we need a public service sector that is functional. Right now there is no functional sector anywhere, not even parliament, because everyone is busy trying to survive or to steal for the sake of it. National resources, which by the way are in plenty, are informally distributed, as in “jungle law” with survival of the fittest. We need a more organized way of distributing national resources, which leads to incentives to implement government policies, laws, and regulations. Reduce the gap between the minimum and maximum wage, reduce wage bill (stop creation of new districts, these tantamount to a consumption economy) and use resources for the good of the people of Uganda. Declaring a disaster area just leads to more channels for stealing resources via the responsible offices.

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