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This story was originally published on USAID’s Act to End Neglected Tropical Diseases | West Program website. It has been republished here with permission.

Meet Kebie Koroma, a 14-year-old from the village of Kakamathor, located in Bombali district in the north of Sierra Leone. At the age of two, Kebie’s parents noticed something unusual on his left foot. At first, they thought his foot was bewitched. Despite their desperate attempts with local healers, Kebie’s condition deteriorated daily. Unbeknownst to them, he was suffering from lymphatic filariasis, a debilitating mosquito-borne parasitic disease endemic to Sierra Leone.

“We didn’t know it wasn’t a spell that plagued our son, but a medical condition that required the help of [modern] medicine,” says Gbessay Koroma, Kebie’s father.

Myths and Misconceptions

In his community, myths and misconceptions about lymphatic filariasis were rampant, and Kebie faced taunts from schoolmates, due to the stigma surrounding the disease. Luckily, community outreach programs led by the National Neglected Tropical Disease Program of the Ministry of Health and USAID’s Act to End Neglected Tropical Diseases | West Program, led by Helen Keller Intl in Sierra Leone, have been instrumental in dispelling myths and fostering acceptance.

“Now I have friends, and no one provokes me because of my swollen foot,” emphasizes Kebie.

A teenage boy in Sierra Leone sits on a bed reading a book. His left leg is crossed over his right and his left leg and foot are swollen.
Kebie Koroma reads his favorite science textbook in his bedroom at home.

Lymphedema Management

In 2005, lymphatic filariasis was confirmed to be widespread in all 16 of Sierra Leone’s districts. In 2008, Helen Keller with funding from USAID, supported Sierra Leone’s National Neglected Tropical Disease Program to start mass treatment campaigns for lymphatic filariasis, reaching 100% geographic coverage in 2010. To date, 15 out of 16 districts no longer need mass treatment for the disease, a remarkable achievement. Working with community and religious leaders during mass treatment campaigns helped improve participation, reduce stigma, and spread awareness about the disease.

In addition to preventing transmission through mass treatment campaigns, morbidity management and disability prevention strategies are critical for alleviating the suffering of those living with lymphoedema, a condition caused by lymphatic filariasis which is characterized by the swelling of body parts. Thankfully, the severity of lymphoedema can be reduced with appropriate hygiene, skin care, and exercises to support lymphatic drainage, otherwise called the “essential package of care”. This can help those affected with lymphoedema manage everyday symptoms, however people with lymphoedema must have access to this continued care throughout their lives to manage the disease.

Families, such as Kebie’s, have learned these essential care practices which can improve the quality of life for those suffering from the disease. Access to lymphoedema management services coupled with mass treatment campaigns and the accompanying awareness raising campaigns have been instrumental to reduce the impact of this disease in Sierra Leone.

A man tends to a teenage boy's swollen leg while sitting on a porch in Sierra Leone while another man watches.
Abu Bakarr Kuyateh, one of the 16 neglected tropical disease focal points, teaches Kebie’s father how to best take care of the foot to further reduce infections. 

Dr. Ibrahim Kargbo-Labor who leads Sierra Leone’s national effort to control and eliminate neglected tropical diseases, says he is pleased with these innovative approaches: “These outreach programs have not only tackled misconceptions but have also aided the introduction of lymphedema management in districts like Bombali, Karene, and Kailahun…” he says.

While Sierra Leone has made significant progress in reducing community wide transmission, Kebie’s district, Bombali, still requires mass treatment campaigns to further eliminate lymphatic filariasis.

“Bombali is Sierra Leone’s only district where mass drug administration for lymphatic filariasis is still needed,” says Victoria Turay, Neglected Tropical Disease Program Manager for Helen Keller in Sierra Leone. “This means that 9 million people (in the remaining 15 districts) are no longer at risk of lymphatic filariasis,” she emphasizes. However, remarkable improvements have been made to reduce the burden of this painful and irreversible disease on the residents of Bombali, though challenges persist for some individuals like Kebie.

On average, Kebie walks 10 miles daily to and from school. Kebie excels academically, earning admiration from teachers and classmates alike. “He is a brilliant boy,” says Pastor Timothy Sesay. “Despite missing some sessions due to lymphatic filariasis, he usually ends up in the first five positions out of the 36 pupils in his class,” Sesay affirms.

A Sierra Leonean teenage boy raises his hand while sitting in a classroom.
Kebie has performed well at school, ranking fifth out of 36 students.

Addressing Gaps and Ensuring Sustainability

Sierra Leone continues to make tremendous progress toward achieving the elimination of lymphatic filariasis as a public health problem. Dr. Angela Weaver, who leads Helen Keller’s Neglected Tropical Disease Program and has been a steadfast advocate for provision of morbidity management services, stresses that, “Lymphatic filariasis is a complex disease. Mass drug administration is critical to reducing its transmission, however, we cannot neglect the people already suffering from the disease. They deserve access to ongoing care, and this requires a holistic approach.”

Two Sierra Leonean teenage boys play soccer together outside.
Kebie dribbles with his best friend, Aruna, as they both play football during lunch break at school. 

With support from Act | West, the National Neglected Tropical Disease Program will continue to advocate for greater integration of neglected tropical disease health services into the national health system to make treatment for lymphedema more accessible, affordable, and reliable through the national insurance scheme and universal health coverage policies. Though much progress has been made to reduce the burden of lymphatic filariasis in Sierra Leone, additional investments are needed to expand services, draw government commitments to allocate resources and ensure that the health system is prepared to offer these services to those in need. Kebie is one of the youngest known people in Sierra Leone to suffer from lymphedema. His story is proof that with the right support, everyone has an opportunity to reach their full potential. His district still requires mass treatment, and continued investment in the healthcare system is crucial to ensure everyone, like Kebie, has access to the care they need for years to come.

A Sierra Leonean boy wearing a backpack stands in front of a road sign.

Help create healthier futures for children like Kebie.