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By Annonciata Byukusenge
Sophie Imanizabayo is suffering from podoconiosis. Her daily activities consist of sewing clothes in the Muhoza sector, Musanze district. She said how the Podoconiosis known as elephantiasis affected her in her childhood and how their parents went to the traditional doctors because they did not know what happened to her.
“When I was six years old my left leg was pimpled as broken. My parents said that I was broken while playing with other children. After one month, the pimple increased too much and they took me to the traditional doctor because they guessed that our neighbors poisoned me. Tradition doctors gave my parents herbal medicament for a drink and another for a massage.”
They continued to collect traditional medicines for six years. When she was 12 years old, her parents stopped the traditional medicines because the swelling did not decrease and it was extended from the foot to the knees and her right leg was affected when she was 10 years old.
“In 2016 my legs were big and I wasn’t able to wear shoes because of the swelling. My parents took me to the hospital and doctors did not identify the illness immediately. Here I had 15 years. After three months, the doctors told us that I was suffering from elephantiasis. They advised my parents to go to Heart and Sole Africa (HASA) for treatment.”
The podoconiosis mapping conducted by Rwanda Biomedical Center (RBC) in 2017country countrywide revealed that an estimated 6000 people affected with podoconiosis. The establishment of podoconiosis treatment centers has started where currently more than 1400 patients are receiving the services countrywide. Podoconiosis affects four million (4 million) people worldwide. Parasitic worms that spread through mosquito bites often cause the condition. Globally, there is evidence of podoconiosis in 17 countries (12 in Africa, 3 in Latin America, and 2 in Asia).
Podoconiosis is prevalent in 19 African countries. In 2020, an estimated 114.5 million people lived in areas suitable for podoconiosis in Africa.
The prevalence of podoconiosis varies by country, with Ethiopia having the highest prevalence and Rwanda having the lowest.
Podoconiosis is found in high-altitude tropical and sub-tropical regions of 17 countries, with 12 of them located in Africa. Ethiopia has the highest number of people with podoconiosis (1.5 million cases), followed by Cameroon (42,000 cases) and Rwanda (7000 cases) in the African continent. Women are at a 1.15 times higher risk of developing podoconiosis than men. Common risk factors for podoconiosis include living and working barefoot on red clay soils, genetic susceptibility, and long-term exposure to red clay soils. This condition more frequently affects poor rural communities dependent on subsistence farming and is reported in other occupations involving prolonged contact with red clay soil. https://ihopejournalofophthalmology.com/podoconiosis-in-africa-through-research-to-policy
The race to eliminate podoconiosis, a debilitating tropical disease, in Rwanda by 2030 necessitates surmounting challenges ranging from poverty and lack of awareness to gaps in healthcare access.
Despite the location’s international appeal, many of Rwanda’s communities focus on a local concern. Podoconiosis is a neglected tropical disease marked by swelling of different areas of the body, especially the limbs, and thick, hard skin. People with podoconiosis can become permanently disabled and experience mental, social, and financial distress, further leading to stigma and poverty, according to the World Health Organization.
Traditional barriers to treatment
Some of the Rwandan community mistake the initial symptoms of podoconiosis as signs of poisoning.
Uwingabire Providence has been suffering from elephantiasis/ podoconiosis for 22 years because she affected by podoconiosis in 2006. Her testimony focuses on how the parents were not informed about elephantiasis disease and they need awareness of it.
“When I was in primary school, I saw small pimples on my legs. After one week, the pimple was like skin disease and it was inflamed. My parents said that our neighbors poisoned me because the pimples were filled with water and it caused much pain.”
She added that her parents took her to traditional doctors and gave them herbal medicine for treatment.
“We used that herbal for six years and I didn’t recover. At 12 years old, my parents stopped to use traditional medicine and took me to the hospital. The doctors helped me as a skin infection patient because they did not identify the illness immediately. In 2008, I joined Heart and Sole Africa (HASA) for treatment, now the pimple has recovered and the swelling has decreased. ”
She added that if her parents were not informed about elephantiasis, they could help her with treatment on time.
“Awareness for the community is needed because they confuse podoconiosis with poison. When they are informed, they will take care of their kids for wearing shoes.”
The important thing the community has to know is that the podoconiosis is not contagious. Said Uwizeyimana Jeanne the director of Heart and Sole Africa (HASA).
Nyiraminani is a mother of three kids who live in Nyaruguru district. An interview with Forefront Magazine said that Podoconiosis is poison, not an illness.
“In our village, we know that Podoconiosis/ elephantiasis is poison because isn’t a common sickness. Some people poison their neighbors because of jealousy. I don’t understand how you link to wearing shoes with avoiding poison.”
She added that, if the reason is not wearing shoes they need many things like information about elephantiasis and support for shopping shoes to our kids.
Mukaneza Jacqueline, 52, suffers from podoconiosis. When she was in primary school, her legs became inflamed. Her parents thought her legs were broken and consulted traditional doctors. Soon, however, they worried that Jacqueline’s condition was the result of poison.
“We tend to think podoconiosis is a poison illness. If you see your kid has pimples on the skin and inflammation, immediately you think that your kid is poisoned,” Jacqueline says, explaining the local belief that only traditional doctors can help in this situation.
Her parents stopped using the traditional medicine after three years, when she was 15 years old because the swelling did not reduce; in fact, it had spread to her knees. Years later, the family consulted doctors at a local hospital, but they were unable to identify the condition. For 30 years, Jacqueline was unable to access treatment.
Rugerabicu is a health community worker. He said that they do not have enough information about elephantiasis. They need awareness to help the community understand that elephantiasis is a disease, not poison as they fixed it.
“We (Health community workers) contribute to different campaigns and programs to help people to be aware of different diseases, but on podoconiosis, we are still uninformed. We need training and after getting information, we will share it with the community.”
Podoconiosis is a tropical lymphedema clinically distinguished from Lymphatic Filariasis (LF) through ascending and commonly bilateral but asymmetric. Evidence suggests that Podoconiosis results from a genetically determined abnormal inflammatory reaction to mineral particles in irritant red clay soils derived from volcanic deposits. According to WHO, Podoconiosis is a form of elephantiasis arising in barefoot subsistence farmers in long-term contact with irritant red clay soil of volcanic origins.
The Rwanda Biomedical Center says that there are people who haven’t the ability to wear shoes and health experts say that Podoconiosis is a disease of the feet and legs that is caused by the combination of walking and working without shoes for a long time.
The impacts of podoconiosis on the affected people
Illness of Podoconiosis caused them to drop out of school. This is a common challenge to Sophie and Providence. They can travel a long trip on foot because of podoconiosis.
The serious impact on those young girls is that they dropped school because of podoconiosis. They reached out for treatment a long time and now they cannot back to school as they say.
Jacqueline is a mother of five children. “Except for dropout, because I was affected when I was in primary school in my third year of school, as a mother has the responsibility to take care of everything at home and has a problem walking. This is a big challenge for a family, you cannot work anything and you need to eat every day.”
Even though this story focuses on young girls and women, the men are also affected as Munyaribanje Théoneste another patient suffering from Podoconiosis says.
“I am a potato farmer. The podoconiosis affected me at a high level in my family. A father of four children stays at home from Monday to Sunday without participating in livestock can generate income for the family and needs to eat twice per day.”
He added that he has had podoconiosis for 48 years, and says the treatment has helped decrease the swelling in his legs. The improvement means he can now wear a size 37 shoes instead of size 42.
Now I can wear boots and go to my farm to plant potatoes.
Madame Jeanne Uwizeyimana emphasizes that podoconiosis is a chronic disease but it is treated.
“Wearing shoes is the most important measure to prevent podoconiosis/we encourage people to wear boots while doing farming /agriculture activities.”
“Podoconiosis non- communicable, it is a chronic disease but it can be treated, the swelling will decrease, the pain will be restored and the person will be able to do their normal activities and life will continue. If left untreated, it can have a variety of side effects including disability.” Said Uwizeyimana.
She added that the parents have the responsibility to take care of their kids for wearing shoes, but some of the community are not able to shop for shoes for their kids.
“The big challenge is that the majority of rural communities are vulnerable. Is not easy to tell people to buy shoes and they do not have food for their kids. Education is a journey; slowly their behavior will be changed.”
The role of parents in the eradication of podoconiosis
Josée Nyiransabimana is a rice farmer in Munyazi Swamp, Huye district. She farms without any protection to the NTDs like podoconiosis, bilharzia because rice farmers are one of the group exposed on NTDs.
She says that podoconiosis is a poison not a disease. I listened the podoconiosis on radio program, but there is no other information on it.
“Is not easy to understand that podoconiosis is a disease. We know that the poisoner use bad thing and poison their neighbors. If it is a disease, why people affected by it can’t treat?”
“Here we need to be aware on podoconiosis as women farmers and health community workers visit household to household as they do on malaria or HIV.”
Podoconiosis affects poor, remote, subsistence farming communities and, by affecting livelihoods, it traps these communities in poverty. Women and girls are both more likely to contract podoconiosis and more likely to suffer from its social and economic consequences.
About prevention and how parents have to protect their kids, Nyiransabimana says that they can’t inform kids without information.
“To inform/educate someone requires to be informed ourselves. Unfortunately, we do not have information ourselves. We need information and financial support for gaining the materials needed to use in prevention especially rice farmers, because some of them like boots are very expensive.”
Recently, Forefront Magazine conducted an interview with Mr. Jean Paul Bikorimana, former employee of Heart and Sole Africa (HASA).
He highlighted that parents have to be responsible for their kids because kids under 10 years are not able to provide any service themselves.
Parents should take extra care of their children because podoconiosis shows symptoms within ten years. Thus, the child helped to find shoes to wear without stepping on the ground, and there were no more new cases of this disease.
Treatment of Podoconiosis in Rwanda
The 1400 patients are receiving services and support care treats in Rwanda. Heart and Sole Africa (HASA) provides the supportive care and treatment of podoconiosis patients. They started the campaign of awareness in different districts because 30 districts of the country identified elephantiasis patients.
Heart and Sole Africa (HASA) as supportive care also treat elephantiasis patients, now “we work with 11 Health Centers (treatment centers) in partnership with Rwanda Biomedical Center (RBC). This number is too small, but we have the goal of extending our activity to the whole country.” Added by Bikorimana.
How to prevent podoconiosis?
It is possible to prevent new cases through awareness, integration, and engagement of different stakeholders.
The identified cases should continue to receive treatment for better improvement and to avoid the worse condition.
Confronting barriers to elimination
Mr. Jean Paul Bikorimana, said that public awareness is key weapon to eliminate podoconiosis in Rwanda.
Improving treatment outcomes and awareness of podoconiosis will not be easy as most people who live in the rural areas of Rwanda like Musanze are vulnerable and have very low incomes.
“Poverty is a barrier for implementing these measures. Some of them can afford to start wearing shoes, but others cannot. For example, some families have more than eight kids, including the father and mother they are 10. They only eat once per day, so buying shoes is [difficult],” he said.
Another issue is the need to plaster their house to avoid contact with the ground. Most people living in rural areas are not able to plaster their house.
Limited funding for NTD programs and Resistance to health interventions in some communities also are challenges, but Advocate for increased domestic health funding, collaborate with global and Build trust through community health workers and cultural competency training can help. WHO. (2023). Roadmap for neglected tropical diseases 2021–2030, Link.
How to prevent podoconiosis?
It is possible to prevent new cases through awareness, integration, and engagement of different stakeholders.
The identified cases should continue to receive treatment for better improvement and to avoid the worse condition.
”Is it possible to end podoconiosis in 2030?
The current plan is that podoconiosis will eliminate by 2030 and by 2024, access to healthcare reached 95%.
She added that podoconiosis non- non-communicable, it is a chronic disease but it is treated. Is not easy to eliminate chronic disease and they cannot say that the patients of podoconiosis are decreased, because it is a chronic disease. According to the survey 2019 published by Rwanda Biomedical Center, in Rwanda, they count 6429 patients of podoconiosis in 30 districts of the country.
Solutions
Neglected Tropical Diseases (NTDs) are a group of parasitic, bacterial, and viral diseases that disproportionately affect the world’s poorest communities. Rwanda, like other sub-Saharan African countries, faces challenges with diseases such as soil-transmitted helminths, schistosomiasis, lymphatic filariasis, and trachoma.
Improve Water, Sanitation, and Hygiene (WASH)
Many NTDs are waterborne or transmitted through poor sanitation.
- Expand access to clean drinking water and improve sanitation facilities in schools and communities.
- Promote hygiene education, particularly handwashing and safe food preparation practices. Reference: CDC. (2021). Neglected Tropical Diseases and WASH Interventions, Link.
By combining preventive chemotherapy, WASH improvements, enhanced surveillance, community engagement, multisector collaboration, and research, Rwanda can significantly reduce the burden of NTDs. Sustained government commitment, community involvement, and international support will be key to success.
