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My open letter to the Minister of Health Dr. Jane Ruth Aceng who denies the existence of nodding disease
Sudhir Byaruhanga
Posted: 1 week 1 day

Dear Dr Aceng,

On Monday 5th March, you told Ugandans that the last case of nodding syndrome in northern Uganda was recorded in 2012 and that some people were confusing the condition with epilepsy.

I think even when your position requires that you oversee issues of health in Uganda, there are some things you are failing to attend to with care and seriousness.I first heard of nodding syndrome killing people in Northern Uganda in 2010.

Hundreds of children and adults have died.


Shortly after, the health ministry promised that it would work to establish the cause of nodding syndrome.

Blood samples were flown to Atlanta, USA for investigation but to date, the ministry is yet to publicize the results.

This would have helped mothers and the affected communities know what is killing them.



In 2016, I visited Kitgum and Omoro districts after learning that many children were dying.

In Tumangu village, I found Gloria Angwec bedridden and crippled; her muscles shrinking to the bones.

She was lifeless and was not receiving the anti-seizure drugs because the nearest clinic was about seven kilometres away from home.

A few months later, I returned to the home, only to be welcomed by a grave in the compound of Angwec's grandmother.

The old woman had tried her best to take care of the girl but she later formed the statistic of the hundreds who have succumbed to the silent killer - nodding syndrome.



Some of the children like Neal Kidega and Jennifer Aromorac who I had found on the verge of death were taken to a care centre in Odek sub-county Omoro district.

They can now walk and hopeful they will be fine.

This centre was funded by an American neurologist Suzanne Gazda who gave away over 80% of her salary to take care of Ugandan children.

Anyone would find it shameful that the Uganda government could not feed less than 100 children at the care centre. Some children significantly improved and were given psycho-social therapy to reawaken their nerves that had failed.


I did a story showing that the children at the centre were in peril since the American was withdrawing due to financial constraints. The health ministry did not do anything about it. In Tumangu village, there was another centre constructed by the same doctor but lacked items such as beds and office equipment.

Tumangu means ‘even a beast is better.’ After the story aired on NTV, the National Social Security Fund (NSSF) donated beds and computers to ensure that the centre is reopened. Shortly after it was reopened, Suzanne withdrew in November 2017. The children were sent home where they faced poverty, despair and sudden death.


Kitgum General Hospital has a centre dedicated to those suffering from nodding syndrome. It has not been utilized as expected because there is no food given to the patients. The food budget was shs12 million annually which translates into one million shillings per month. This money was not forthcoming.


My recent visit

What prompted me to go back was the deaths that happened after the centre closed last year.

In about three months, six children died of nodding syndrome.

There was also a suspected new case in Akoyo village in Omoro district.

The syndrome slowly takes a toll on children before crippling them.


But even with all this, you Dr Jane Ruth Aceng are saying the last case of nodding syndrome was reported in 2012 and that some people are confusing epilepsy for nodding syndrome.

Really? It's good to go on the ground and do thorough investigations.

But what investigations when these people have never been told what causes the syndrome, nearly ten years after it was first reported in 2009?

I am not a doctor but I know epilepsy does not cripple someone.

It causes seizures and depending on where one falls, they could get injured, suffer burns or scalds.When government recently allocated a meagre 80 million shillings for the seven affected districts, some districts spent the biggest portion of the money on motor vehicle repairs under the instruction of the health ministry.

It is unfortunate that you the people who are supposed to do the needful want to play politics with young peoples lives.

We should not treat such a deadly condition by embellishing facts.

The affected families are not only living in limbo but deserve to be heard and treated with dignity since they are Ugandans with all the rights and not second class citizens.



They may be poor and few people reach out to them but let's not take advantage of their remote location to sugarcoat their pain.If the ministry says there is no nodding syndrome, why is there a task force on nodding syndrome?

Why waste government resources on that?. If the findings show it's epilepsy of a different strain, then say so?

This kind of lip-service leaves many Ugandans disappointed.

The medical workers in health centres in the affected districts can hardly locate the homes of the patients, yet they are paid to do outreach programs.

The ministry may be providing drugs but a lot more needs to be done.



Let us not lie to ourselves that government cares. The annual budget for samosas for ministers and MPs is over 1 billion shillings.

When you consider that 72 million shillings is all that is needed to reopen and run the nodding syndrome centre in Odek for a year, you wonder where our priorities are.

These dying children are the future of this country. Most parents can’t work because the nodding syndrome patients require full-time monitoring.



I don’t think Deputy Speaker of Parliament Jacob Oulanyah also doesn't understand the problem yet his area is one of the most affected and he has spoken out passionately about the government neglect of the people. Let's look at nodding syndrome as our problem that requires urgent attention.

If we remain arrogant and defensive, the spirits of those innocent souls that have perished and will continue to perish, unless we act fast, will haunt us forever.



Sudhir Byaruhanga is an Investigative Reporter at NTV Uganda