Chrysalis Youth Empowerment Network

Butterflies bring Nodding Disease Answers to Remote Villages

Nancy (15)

My  Name is Nancy Lakot.  I am 15yrs  old and one of the Butterfly North project.  As a young person, I aim to become a social entrepreneur and to have my project both in the village and in Kampala. In the village I teach children how to play board games and advice and I give advice about young people 10 to 17 yrs about HIV/AIDS.  In Kampala I have one called MDD (Music and Dancing) because through singing and dancing it may change the life of people living around Uganda.

This year we wanted to help the children living in Northern Uganda suffering from Nodding Disease, which affects thousands of children.

Boy with Nodding Disease

As a member of the Butterfly Project we looked for information about nodding diseases from internet to help the people from the villages the information was helpful because they were not having any information and no ideas about the diseases and how to determines a person living with that diseases .

I wanted to try to find out what was  causing the disease, the signs and any other information about the disease.

Even my L.C.1 from my village didn’t very much about the disease, just know the signs of it.

We took some information to our home villages and gave it to people in health centres – you can see the information here.

These are the Symptoms of nodding disease I found from the internet:

The symptoms of nodding syndrome include head nodding, constant drooling of saliva, mental retardation and stunted growth. The nodding is triggered by placing food in front of the children or eating. It is also triggered by cold weather or a cold bath, but in such a case, the children recover when they get warm.

Nodding syndrome was first reported in northern Uganda in 2005 in Amida sub-county, Kitgum district. Since then it has spread to Amuru, Agago, Lamwo and Pader districts, affecting over 3,000 children I find out from the people but our information that we found from the internet was not very different from but some area in the village were not having the same information about the disease


As me I want the LC to ask the doctor near us to tell me that the diseases is cause by eating dirty food or by staying in a dirty environment.  Although the causing of the disease is not well known I think a cleaner environment will help people in a village.  Information is needed to be given in the villages and I am glad I was able to give my village area the information.