Bilharzia, the silent killer

Bilharzia is a water-borne disease that many take time to discover they suffer from it. Considered the most dangerous tropical disease, bilharzia is a silent killer. In this special report, DAVID RUPINY of Rainbow Radio explores the disease transmission, symptoms, treatment, disease burden, disease impact and attempts at control – particularly the attempt to eradicate it by 2020.

The story was broadcast with funding from ACME’s Enhanced Media Reporting for Transparency and Accountability (EMERTA) programme.

Read the script below and listen to the broadcast from the link below the story. 


Radio Station Rainbow Radio
Programme Name Bilharzia – The Silent Killer
Presenter and Producer David Rupiny
Transmission Date and Time 13 August 2014, 8:80 – 9:30 PM


Hello and welcome to “Bilharzia – the Silent Killer” a special programme on Rainbow Radio focusing on bilharzia, a neglected tropical disease which is considered the most dangerous of all neglected tropical diseases. I am David Rupiny. In the programme, we will explore bilharzia transmission, symptoms, treatment, disease burden, disease impact and attempts at control – particularly the attempt to eradicate it by 2020.

I spent my childhood in Panyimur, my mother’s birthplace and was more than once treated for bilharzia. For years I had forgotten about the disease – literally speaking. My interest was awakened mid this year when a cousin from Panyimur, who now lives in Kampala – and who looked so healthy and strong – started vomiting and passing out blood. He was rushed to Mulago hospital where doctors suspected many diseases including Ebola. Their findings later zeroed on bilharzias. That is when it occurred to me that bilharzia is not only prevalent but is continuing to strike lethal blows.

According to the Chistosomiasis Control Initiative (SCI) of Imperial College London, bilharzia or “snail fever” is a parasitic disease carried by fresh water snails infected with one of the five varieties of the parasite Chistosoma. In Uganda, there are mainly two types of bilharzia – intestinal and urinary. But the most common type, especially along the Nile valley, is intestinal.

Uganda’s Neglected Tropical Diseases Control Program says bilharzia affects over two million Ugandans in 63 districts out of 112.  Bilharzia sufferers develop severe and sometimes disfiguring disabilities, kidney complications, liver complications, bladder cancer, name it. Children with chronic bilharzia can suffer from anemia and malnutrition, which can contribute to lost days at school and pervasive learning disabilities.

While illnesses such as polio and tuberculosis have been controlled, bilharzia has emerged as a major silent killer, typically striking around the productive age of 35.

Dr David Ndawula of Ntinda Family Doctor’s Clinic is a specialist in neglected tropical diseases, particularly bliharzia. He explains how the disease is transmitted:

Byte………….Dr Ndawula on signs and symptoms

Many people suffering from enlarged spleens, liver complications, anemia, kidney damage, urinary infections, hypertension of the abdominal blood vessels, vomiting blood, intestinal raptures, etc are actually victims of bilharzia without them knowing. Quite scary, isn’t it?

The Nebbi District Vector Control Officer, Dickson Onoba, puts it more graphically:

Byte………….Onoba on signs and dangers

In Uganda, bilharzias was first reported and observed in 1902 in present day Kuluva hospital in Arua District. From then on, bilharzia is a major health problem in Uganda, though neglected. I asked Onoba why – after a century of knowledge on bilharzias including the fact that it can be prevented and treated – the disease is very much around.

Byte………….Onoba on rampant transmission

In my interface with Onoba in Nebbi, he repeatedly talks of the Albertine area, particularly Panyimur, as the black spot in combating bilharzia. So I leave for Panyimur – about 50 kilometers East of Nebbi. As I slope the beautiful western rift valley escarpment, a clear view of sky-blue Lake Albert greets me. The sun shines gladly on the lake on which a few canoes glide. The scene is paradise-like, but, unfortunately also a death trap.

According to Onoba, prevalence of bilharzia in the Lake Albert area remains high, despite interventions. Soon I arrive at Panyimur Health Centre III. It is 3:00 pm and a few women and children – patients and their caretakers – sit idly on the veranda of a ward. I enter the main building – it is quiet, save for bats making noise in the roof and their unmistakable smell. On the concrete bench is a teenage mother with her baby waiting for the health workers who are reportedly for a lunch break. I inquire around and I am told they attended to many patients since morning and broke off late for lunch and that they would be returning. Soon the baby starts to cry.

Byte………….Baby crying 1

As I wait, I scan through the information pinned on manila papers on the wall by the Panyimur Sub-county Health Assistant:

For a population of 27,000

Safe water coverage is at 70%.

Latrine coverage is at 75 percent

Kitchen coverage is at 60%

Refuse pit coverage is at 61%

In the year ending June 2014, cases of intestinal worms – most of which are caused by bilharzia – stood at 1,200, representing slightly over 40 percent of all stool examined. Luckily, the anti-bilaharzia drug, Praziquantel or PZQ, is readily available.

Bilharzia can be effectively treated using Praziquantel – which is its primary form of treatment. A single dose of the drug has been shown to reduce the burden of infection and severity of symptoms. Millions of the drugs have been given out, including in Panyimur.

As I sit down to chat with the teenage mother, as we both wait impatiently – the baby starts to cry even louder and painfully.

Byte………….Baby crying 2

I vaguely figure out – perhaps she has bilharzia or some ailment. My mind drifts back to the statistics on the wall and that is when a young male health worker walks in and tells me the in-charge is away and would be in office the following day. He settles down to attend to the young mother and her child as I walk out to go and meet the Panyimur Sub-County Health Assistant, Richard Thopara, who compiled the results. A group of children playing welcome me as we settle down to talk:

Byte………….Children singing

Byte………….Health Assistant, Thopara explains

As I walk out of Thopara’s home, the children who welcomed me earlier rush to me, offering that I record them as they belted out the national school anthem:

Byte………….School Anthem

As the day breaks, I set off to the health centre.

Byte………….Health centre ambience

I find about three-dozen patients already in the queue, being attended to. I head straight to the laboratory where I find the lab technician, Dick Jagen, peering through his microscope. On his table are a string of rapid test kits, some already in use. He lights up on seeing me as I apologise for my impromptu visit and requests for a fraction of his busy schedule. I ask him to take me through the screening process:

Byte………….Lab Tech Jagen

With scientific proof from the horse’s own mouth, there is no doubt that bilharzia is indeed a big health challenge – at least in the Lake Albert area. Next I approach the Clinical Officer, Linus Amula, who leads me to his modern office in a newly built HIV clinic. He strongly believes that a poor attitude to health and lifestyle makes it hard to combat bilharzia:


Amula adds a new twist to the bilharzia equation: lake-side way of life, poverty and homelessness. Interestingly, less than a kilometer from the health center is Munyua landing site, dubbed number one for snail shell mining. I simply can’t wait to be there…

Byte………….Polla 1

Turning to go, Polla beckons me to go see his business – thanks to the snail shells. I ask that since he seems to have quite some sizeable business, by rural Uganda standards, why can’t he opt out of the snail shell business altogether. He answers me with a flat No!

Byte………….Polla 2

Clinical officer Linus was right when he described life on and off the lake. Perhaps attracted by the recorder, a collector of the snail shells – commonly known as Akello Casette – offers to sing me a song:

Byte………….Song Akello

I then head to Nyakagei Primary School where mass treatment of bilharzia using PZQ has been carried out. In the 2012 Primary Leaving Examinations, it got two first graders after years of first grade drought. In 2013, the school registered four first graders and was among the top five schools in Nebbi District. By national standards that is poor performance, but for a school like Nyakagei, tucked in a non-descript part of Uganda that is no mean achievement. I am curious to find out what could be contributing to the small yet significant improvement.

Byte………….Nyakagei headmaster


Byte………….Nyakagei Girls

As I leave Gladys and Sifa, I chew over their big dreams and agree that they are actually achievable. Speaker Rebecca Kadaga was actually like Sifa decades back in the villages of Kamuli. Yet the factors the headmaster enumerated like early pregnancy, negative attitude and bilharzia may frustrate those dreams.


The Nebbi District Vector Control Officer, Dickson Onoba and the local health assistant, Richard Thopara, both stress the importance of leadership in combating bilharzia and other health problems. Thopara, for example, says two neighbouring villages on the shores of Lake Albert had different bilharzias prevalence rates– one at 91 percent and the other at 19 percent– owing to the different leadership styles of the Local Council I chairpersons. While one had all sanitary facilities and led by example, the other had inadequate facilities and didn’t even live in the village.

To appreciate the importance of leadership in combating bilharzia and other diseases, I headed to the Local Council II chairman of Panyimur Sub-county, Shaban Ofoi – a suave, smart and boisterous graduate of Makerere University. Ofoi says good leadership is key when dealing with bilharzia.

Byte………….Ofoi on Leadership

To drive his point home, Ofoi says if clean and safe water, latrines and proper hygienic practices are promoted, bilharzia and other water-borne diseases should be under control:

Byte………….Ofoi on sanitation

As I say bye to Ofoi, a local clan leader, Rashid Bithum, makes his entry, majestically. I pick his mind on the fact that before locals here knew much about bilharzia, if one had an extended abdomen and died, or vomited blood and died – due to bilharzias – some unfortunate person would be labeled as having bewitched that person. This would lead to revenge killings and strained relations. While the majority of the people now don’t buy that thought, a few do, as Bithum explains:

Byte………….Bithum on witchcraft and bilharzia

According to Bithum, the traditional leaders are using their authority to influence thinking on bilharzia with positive results:

Byte………….Bithum on Sensitisation

I also visit my 70-year-old mother Roseline Ocanda, a retired Kalongo Nursing School trained midwife who runs a local medical concern. She is a link between the past and the present. She has made many bilharzia referrals and knows the community well. I ask her if she realistically thinks the locals will change their lifestyle to combat bilharzia.

Byte………….Roseline Ocanda

In 2003, Uganda, with support from Bill and Melinda Gates Foundation, launched, in Pakwach, the first national programme in Sub-Saharan Africa to tackle bilharzia under which children and adults in affected areas were to receive annual treatment; after which the Ugandan government would assume responsibility for bilharzia control. For over 10 years the programme has been running, initially focusing on endemic districts and now all areas including those with infections below 20 percent.

In May 2012, the World Health Assembly resolved that bilharzia “be eliminated as a public health problem by 2020”. With support from DFID, the National Neglected Tropical Disease Control Programme has embarked on treating the disease in Uganda. By March 2014, 2.8 million PZQ were reportedly delivered across 127 sub-counties to treat 1.1 million people.

The programme also integrates education campaigns and improved water and sanitation, breaking the life cycle of the disease by encouraging the use of latrines and standpipes.

While people in places like Rhino Camp in Arua District, Obongi in Moyo District and Pakwach have seized the initiative with both hands and the results are great, other areas like Panyimur are lagging behind. The Nebbi District Vector Control Officer Dickson Onoba explains why.

Byte………….Onoba on negative attitude

Tom Lakwo, a senior entomologist at the Vector Control Division of the Ministry of Health, can’t agree more. According to Lakwo, of all bilharzia infested areas in Uganda, Panyimur is the most difficult to operate in, hence the very high prevalence rate. He challenges the local elite to supplement government’s efforts especially in changing the people’s mindset.

Byte………….Lakwo on role of local elite

While bilharzias is treatable, Dr David Ndawula feels that prevention is the best solution and the second best is early de-worming.

Byte………….Dr Ndawula on prevention

Full-blown bilharzia is lethal. According to Tom Lakwo of the Vector Control Division, medical conditions created by advanced bilharzia are irreversible. The treatment of advanced bilharzia is so expensive and far beyond the reach of most Ugandans.

Lammy Olarker, a bilharzia sufferer, underwent endoscopy, a complicated and expensive procedure at both Nakasero Hospital and Nsambya Hospital to treat his ruptured liver. Endoscopy is a procedure where a telescope is pushed down the food passage to look and identify where the problem is and treat it by injecting medicine where the problem is. In the case of Olarker, it involved drying up the bleeding blood vessels in the lier – a serious condition which causes internal bleeding. The procedure took Olarker backwards by over three million Uganda shillings. He had to literally beg friends and relatives for financial help. Olarker, who spoke in Alur, explains the financial and emotional strain he experienced like being denied treatment until he put money on the table.

Byte………….Laa on high cost of treating bilharzia

Dr David Ndawula says ideally treating bilharzia shouldn’t be costly. He argues that the high cost comes because many bilharzias suffers don’t know that they have the disease and only realise when the condition has advanced.

Byte………….Dr Ndawula on high cost

International efforts to combat neglected tropical diseases are also picking up steam. Governments, the World Bank, major drug companies and international NGOs signed the London Declaration on Neglected Tropical Diseases in January 2012, in which signatories pledged to bring bilharzia and 10 other neglected tropical diseases under control by 2020.

Entomologist Tom Lakwo is optimistic that bilharzia will be eliminated in some areas and heavily reduced in others.

Byte………….Lakwo on 2020

Dickson Onoba agrees

Byte………….Onoba on 2020

According to Onoba, the best approach to tackling bilharzia is through sustained health campaigns.

Byte………….Onoba on sustained health education

Onoba, who has been fighting neglected tropical diseases in Nebbi District since mid 1980s, says a big challenge he sees in eradicating bilharzia by 2020 is the continuing neglect of the Vector Control Division.

Byte………….Onoba on neglect 1

But senior entomologist Tom Lakwo disagrees

Byte………….Lakwo on neglect

Tom Lakwo’s defence is not good music to Onoba’s ears.

Byte………….Onoba on neglect final

Neglect of the division or not, Dr David Ndawula, believes that for bilharzia to be eradicated by 2020, there is a need for a multi-pronged approach that tackles education, housing, incomes, sanitation, treatment, and other critical areas of human life.

Byte………….Dr Ndawula on multi-approach

As the clock ticks towards 2020, what remains clear is that the conditions that may affect eradication of bilharzia are very much around. And what better way to end this programme than by Dr David Ndawula prescription of what needs to be done if bilharzia is to be eliminated by 2020.

Byte………….Dr Ndawula on way forward

Thank you for listening – and have a nice time. I am David Rupiny.

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