How elephantiasis is breaking lives in Buliisa and Masindi

What you need to know: Elephantiasis remains a health concern, with two main types: a widespread parasitic form called lymphatic filariasis (LF) and a localised form of non-filarial elephantiasis (podoconiosis) caused by walking barefoot on volcanic soils in certain areas. While Uganda has a national programme to eliminate LF through mass drug administration, the volcanic-soil-related podoconiosis is a separate, significant challenge. Some LF cases still exist in Buliisa and Masindi districts, as Ismail Bategeka reports.

Every morning, Jane Nyangoma, 46, wakes up and pulls herself to the edge of the bed. She cannot walk. Her legs are swollen twice their normal size. She uses her hands to crawl to the doorway and sits outside.

‘I used to farm. I could feed my children. Now I cannot move far. I cannot work. I sit and wait,’ she says from her home in a village near Biiso Town in Buliisa District.

Nyangoma suffers from elephantiasis, a disease that causes painful swelling, mostly in the legs and private parts. It is common in some impoverished, rural areas of Uganda, particularly in Buliisa and Masindi districts.

Elephantiasis is transmitted through the bites of infected mosquitoes, which carry the larvae of a parasitic worm into the human bloodstream.

These larvae then mature into adult worms in the body’s lymphatic vessels. When an infected mosquito bites a person, the larvae can enter the skin and travel through the lymphatic system, causing damage that can lead to severe swelling known as elephantiasis.

Nyangoma sits at her doorway. The sun is rising. Birds sing in the distance. Her children prepare for school. She watches them go.

‘I just want to walk again. Even if I cannot farm, I want to walk to church. To visit neighbours. To feel like a person again,’ she says.

Other elephantiasis patients live like Nyangoma, suffering quietly, far from public attention or government help. The disease has changed their lives. Several cannot walk, work, or support their families. Yet very few have received proper care.

At Buliisa Landing Site, 52-year-old John Byaruhanga sits outside his small house. He used to be a fisherman. Today, he can no longer enter a boat. His legs and private parts are badly swollen.

‘When my legs started swelling, people said I was cursed. Even my wife left me. I cannot work. I stay home. The pain and shame are hard to bear. Sometimes, I stay indoors to avoid people who laugh at me. They think I was bewitched. They do not know that this is a disease,’ he says.

Challenges

Health workers say they are seeing more cases of elephantiasis every month. However, Grace Katushabe, a nurse at Buliisa Health Centre IV, says they do not have enough drugs or training to treat the patients.

‘We are overwhelmed. We have registered 170 patients, but we know some villagers have not come for help. We do not have enough drugs and resources. Sometimes, we give the patients soap and teach them how to clean their legs. But that is not enough,’ she says.

Dr Titus Sabiiti, Buliisa District’s Health Officer, estimates the number of elephantiasis patients in the district to be more than 400.

‘Elephantiasis can be transmitted through mosquito bites and through walking barefoot on certain volcanic soils. The swelling starts slowly. At first, it may seem like a small lump or sore. But with time, the affected area becomes bigger, harder, and more painful,’ he says.

Dr Felex Ruhuhura, the acting district health officer for Masindi, estimates that between 170 and 200 people are currently living with the disease in the district, most of them in rural areas where access to health services is still limited.

‘We are working with the Ministry of Health and partners to expand awareness and preventive treatment. We are also training health workers to identify and manage new cases early. However, challenges such as inadequate medicine, limited transport, and stigma in communities still make our work difficult,’ he says.

Dr Ruhuhura advises that elephantiasis can be prevented through proper hygiene, wearing shoes, and seeking medical care. In Buliisa and Masindi, most people make their livelihoods from farming or fishing, but elephantiasis takes away the ability to walk, stand, or work.

‘My children have to care for me now. Sometimes, they miss school because I need help with washing my wounds,’ Nyangoma says.

Treatments

Dr Musa Kugero, the in-charge at St Jude Thaddeo Health Centre Karungu, in Masindi District, says elephantiasis can be treated if caught early.

‘A drug called Ivermectin can help stop the disease from getting worse. Proper washing and care can reduce swelling and prevent infections. Surgery can also help men with swollen private parts. Surgery is very costly and has to be performed in Kampala. Not many rural people can afford it,’ he explains.

Ivermectin is a key component in the treatment and control of the parasitic infection that causes elephantiasis. It is highly effective at killing the microscopic larvae and preventing transmission of the parasite to mosquitoes. However, it has a limited effect on the adult worms that cause the chronic swelling associated with elephantiasis.

In Karujubu Division, Masindi District, several residents have stopped working due to swollen legs, with some missing treatment for months.

Immy Guhuka was diagnosed with elephantiasis and waited three years for a promised surgery, until his children gave him Shs3m to travel to Kampala for surgery in a private hospital.

‘People do not want to sit near me. Some health workers are too scared to touch me. They think I am cursed. Because of the stigma, I did not visit the health centre regularly. Instead, I used herbs and prayed, hoping the disease would go away. Eventually, I had to go for surgery,’ he says.

According to the Uganda Ministry of Health and The Carter Centre, about 14 million people in Uganda live in areas where elephantiasis can spread easily. In districts in western Uganda, up to two percent of the population show signs of the disease.

A study conducted in early 2024 in seven districts of Uganda found that in the most affected region, Nakapiripirit, the prevalence of podoconiosis (a type of elephantiasis) was 7.2 percent, which is roughly one in every 14 people. The prevalence rates in other specific districts were: Sironko: 2.8 percent (about one in 36 people) Zombo, Rukungiri, Gomba, Hoima and Buliisa ranged from 1.1 percent to 1.8 percent.

According to the World Health Organisation (WHO), lymphatic filariasis (Elephantiasis) affects more than 120 million people in 72 countries throughout the tropics and sub-tropics of Asia, Africa, the Western Pacific, and parts of the Caribbean and South America.

Containing the disease

Elephantiasis treatment involves the management of morbidity and disability prevention (MMDP) that includes simple hygiene measures, such as basic skin care and exercise, to prevent acute attacks and progression of lymphoedema to elephantiasis.

Dr Alfred Mubazi, the acting Assistant Commissioner, Vector-borne and Neglected Tropical Diseases in the Ministry of Health, says Uganda once battled 17 neglected tropical diseases, but they have been brought under control during the last two decades.

‘The five major diseases, which include lymphatic filariasis (elephantiasis), bilharzia, river blindness, trachoma, and soil-transmitted helminths (STH), have been prevented through annual mass drug administration to people living in high-risk areas. Elephantiasis was once endemic in 70 districts,’ he explains.

The health ministry is now carrying out surgery to help men with hydrocele and doing morbidity management for those with lymphedema.

‘For these patients, we focus on preventing secondary infections, because the swelling cannot be reversed. We encourage them to keep their legs clean, use Vaseline to soften the skin, and avoid mosquito bites by sleeping under nets,’ Dr Mubangizi adds.

Nicholas Aliganyira, the chairperson of Buliisa Health Committee, is deeply concerned about the growing number of elephantiasis cases affecting the communities.

‘The District Health Office, together with the Ministry of Health and our partners, is working to expand community awareness, early detection, and access to treatment, despite the challenges,’ he says.

There are no herbal cures or remedies for elephantiasis.

The control of Neglected Tropical Diseases

Uganda has a high burden of Neglected Tropical Diseases (19 NTDs) that affect mainly the rural poor, resulting in reduced socio-economic productivity, hence affecting the development of these populations, as well as national development.

They include Lymphatic Filariasis (Elephantiasis), Schistosomiasis (Bilharzia), Soil-transmitted helminthes (Intestinal Worms), Onchocerciasis (River blindness), Trachoma, Human African Trypanosomiasis (Sleeping sickness), Visceral Leishmaniasis (Kala-azar), Plague, Buruli Ulcer Disease (BUD), Rabies, Scabies, Tungiasis (Jiggers), Podoconiosis (non-filarial Elephantiasis), Echinococcosis, Cysticercosis, Brucellosis, Fascioliasis, snake bite envenoming and Leprosy.

Currently, there are ongoing efforts to prevent, control, and eliminate these NTDs in the country with varying degrees of success. NTDs control is part of the Uganda National Minimum Health Care Package, as highlighted in the Health Sector Strategic and Investment Plan III. Control and elimination of NTDs will contribute to improved health and socioeconomic situation of the affected populations, and addressing NTDs directly impacts outcomes on Sustainable Development Goals (SDGS).

There have been global and regional commitments for addressing NTDs as reflected in the London Declaration on NTDs, WHO Regional Committee Resolutions on NTDs, Addis Ababa Commitment, Accra Urgent Call to Action on NTDs, and more recently the Kigali declaration on NTDs.

The major focus of the Master Plan 2023-2027 is to scale up the NTD control efforts with the eventual aim of achieving prevention, control, elimination, and/or eradication of these diseases in line with the World Health Organization (WHO) roadmap for elimination of NTDs from Africa 2021-2030.

Following several years of implementation with the support of partners, there has been remarkable progress in the control and elimination of NTDs. For example, since 2007, the country has been certified Guinea Worm-free, with no ports of indigenous cases and in 2022, Uganda was also certified for elimination of gambiense Human African Trypanosomiasis (HAT) as a public health problem.

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