Years of struggle: The heartbreaking journey of Mukantarindwa with Podoconiosis

A large portion of Francine Mukantarindwa’s life has been spent battling podoconiasis, a condition she has suffered from since the early age. The mother of five who lives in Muganza Cell, Runda Sector, in the Kamonyi District, is now 52 years old.

Currently, her feet and legs have swollen considerably, causing her constant pain. She explains that the condition began with swelling in her legs, which would burst and heal before returning. However, she never sought treatment, believing it was too expensive.

“This disease started when I was a young girl. I never received treatment because I was raised in poverty. When I grew older, I married a man who couldn’t afford anything, and we’ve lived in poverty, raising five children. As time passed, my legs began to swell more and more until my feet and legs became severely affected, and the pain became unbearable,” she says.

She narrates her late mother also suffered from the disease. Over the years, her condition has worsened, and she fears it may lead to permanent disability.

During an interview with Topafricanews, it became clear that she has no information on where to seek treatment. However, there is a health center in her native district (Kamonyi), where treatment for the disease is offered.

She says, “At this point, my legs hurt so much. I fear that this will eventually lead to disability, and I will no longer be able to walk or do the work that supports my family. If I could get treatment and heal, that would be a blessing, because the poverty I live in is closely tied to this illness. Sometimes, I can’t even leave my house, which makes it impossible to work.”

“I can no longer walk for a long distance; I need to be able to afford a motorcycle or car to take me. There are times when even sitting becomes difficult. As you can see, things are getting worse. I continue to live in isolation, without anyone to give me advice.”

According to Ladislas Nshimiyimana, MPH (Epid.), Acting Director of Neglected Tropical Diseases and other Parasitic Diseases Unit within Rwanda Biomedical Center, there is an estimated 6,000 patients living with Podoconiosis across Rwanda.

The Lancet Global Health report for 2019 reads that despite relatively low prevalence, many patients are likely to be undiagnosed and morbidity management is scarce. The disease is associated with both economic insecurity, due to long-term morbidity-related loss of productivity, and intense social stigma, and increased rates of depression.

Data from Rwanda Biomedical Centre (RBC) Malaria and Other Parasitic Diseases Division’s Financial Year 2023/2024, show that a total of 1311 patients were enrolled and provided services during this period of time.

To end Podoconiosis, the government has intensified efforts by establishing 10 health centers that specifically aim at ending the sickness by 2024. The services are delivered by trained nurses in the health centers and physiotherapists from corresponding district hospitals.

These health facilities include Bugaragara Health Center in Nyagatare District; Mulindi HC (Gicumbi District); Kinyinya HC (Gasabo District); Nyundo HC (Rubavu District); Rubengera HC (Karongi District); Nyamasheke HC (Nyamasheke District); Musambira HC (Kamonyi District); Nyanza HC (Nyanza District); Rango HC (Gisagara District); Remera HC (Kayonza District).

In addition to the treatment centers, other patients are managed in three treatment centers under Health and Sole Africa/Action namely Musanze clinic, Kinoni clinic, Kinigi site.The treatment is free of charge but still, victims don’t go for medication because of stigma.

New hope for sufferers

More than two years ago, Musambira Health Center launched services for people suffering from podoconiosis, as reported by the center’s manager, Brenda Busingye.

Currently, 48 patients from the Kamonyi District and its surrounding areas are being treated, with plans to reach out to others who may still be in the community.

The patients receive care with support from Heart and Sole Africa (HASA), an organization that provides essential supplies such as vinegar, soap, skin creams, skin exfoliation products, foot wraps, and special shoes to accommodate their swollen feet.

Twice a month, each patient is given soap to take home for personal hygiene. They meet at the health center every Thursday for treatment, which is provided free of charge.

The health facility has two staff members trained in caring for people with podoconiosis, including the manager, who works alongside a colleague from the Remera-Rukoma District Hospital’s physiotherapy department.

Busingye explained that early treatment significantly increases the chances of recovery, but some patients with severe cases may live with the disease for a long time.

“The first thing we tell patients when we talk to them is that, like many other diseases, if treated early, it can be cured. Podoconiosis can also be treated if you seek care early. We encourage them to share this information with others so that more people know about the free services available here, and that no health insurance is required because we have a sponsor helping us.”

To assist those without information about where to seek treatment, HASA provides transportation to community health workers who help find affected individuals and bring them to the health center. The staff members at both the health center and the district hospital make two outreach trips a month to search for people showing symptoms of the disease.

Podoconiosis is a type of tropical lymphoedema that causes massive swelling of the lower limbs. It is caused by long-term exposure to volcanic soils and it occurs among genetically susceptible individuals who do not use proper footwear. The disease is thought to be endemic in mostly tropical countries and it is estimated that 4 million people globally.

In 2018, the government developed the NTDs strategic eradication plan through Rwanda Biomedical Center (RBC) with the vision to transform Rwanda into a nation free from preventable diseases by 2024.

Rwanda will host the Twelfth EDCTP (European and Developing Clinical Trials Partnership) Forum on 15-20 June 2025, at the Kigali Convention Centre in Kigali. The forum provides an international platform for the presentation and discussion of cutting-edge research addressing the burden of poverty-related and neglected infectious diseases in sub-Saharan Africa and the capacity development and networking activities that support this goal.