As Africa launches the RESHAPE platform in Kigali, one Rwandan survivor is turning his painful experience into hope for others living with a forgotten disease
For years, Jean Damascene Nizeyimana believed he would never recover.
Living in Burera district in northern Rwanda, his legs became severely swollen from podoconiosis, a neglected tropical disease that affects thousands of poor families across Africa. People stared at him. Some believed he had been cursed. Others thought the disease was caused by witchcraft.
Today, the same man once hidden by stigma is helping other patients walk again.
Nizeyimana was among the voices at the launch of RESHAPE Resilient and Sustainable Health Systems Approaches to Podoconiosis Elimination a new regional platform launched in Kigali on 19 May 2026 to strengthen Africa’s fight against podoconiosis.
The event brought together researchers, health experts, government officials and patients from different countries to discuss how to eliminate one of the continent’s most neglected tropical diseases.
Unlike infectious diseases, podoconiosis is caused by long-term barefoot exposure to volcanic red clay soil. The disease causes painful swelling of the feet and legs and mainly affects poor farming communities in tropical highland regions.
Speaking during the launch, Nizeyimana shared how his life changed after finally receiving treatment.
“My legs were very big,But after treatment they slowly reduced little by little. Now i am much better.” He said
For many years, he said, people around him misunderstood the disease.
“People who say podoconiosis is witchcraft are lying, this is a disease like any other. It can be treated.” he said firmly.
Today, Nizeyimana works with community programs that help podoconiosis patients by producing protective shoes, one of the key ways to prevent the disease.
He explained that many patients cannot afford proper footwear, especially in remote rural communities where the disease is most common.
The launch of RESHAPE highlighted not only the medical challenges of podoconiosis, but also the social isolation faced by many patients.
Professor Gail Davey, founder of Footwork https://podo.org/ and one of the world’s leading podoconiosis researchers, said the disease has remained invisible for decades.
“Podo has been neglected for decades, there are many countries across Africa and the rest of the world where people don’t know that it exists, and people affected are completely forgotten.” she said during the panel discussion.
The discussion included experts from across Africa and global health institutions, including Dr. Asrat Mengiste of Addis Ababa University, Jeanne Uwizeyimana of Heart and Sole Africa Rwanda, Ladislas Nshimiyimana from Rwanda Biomedical Centre, Dr. Gretchen Stoddard of the IZUMI Foundation, Professor Philip Cotton of the University of Global Health Equity, and Jules Mugabo Semahore from WHO Rwanda.
Throughout the discussion, panelists stressed that podoconiosis is closely linked to poverty and lack of access to healthcare.
Researchers shared data showing the disease remains a major public health challenge in several African countries. Ethiopia alone has around 1.5 million cases across 345 districts, while Rwanda estimates more than 6,000 affected people across all 30 districts.
Cases have also been mapped in Kenya, Cameroon and Uganda, while Burundi and Zimbabwe are still investigating the scale of the disease.
Professor Davey explained that podoconiosis patients often live in isolated communities far from medical services.
“Podo patients are often in very inaccessible areas, they cannot travel easily because of their condition, so we need to bring services closer to them.” she said.
Panelists also discussed the importance of awareness campaigns to fight stigma and misinformation.
For Nizeyimana, changing people’s understanding of the disease has become part of his mission.
“Talking about the disease should not be shameful, people need to know it can be treated.” He said
Beyond sharing his story, he now helps make shoes for patients through local support programs. The work, he says, gives him purpose and allows him to help others avoid the suffering he experienced.
During the launch, the IZUMI Foundation announced support for the RESHAPE secretariat, providing initial funding for the regional platform.
However, experts admitted that funding for neglected tropical diseases remains a challenge.
“Funding is very challenging in today’s climate, but a lot of what RESHAPE stands for can be done through sharing experience, exchanging information and working together.” Professor Davey said
The Kigali launch was livestreamed internationally and brought together participants from around 12 countries, showing growing interest in tackling diseases that often receive little global attention.
Naomi Irakoze Mugaragu.