Contributed by Christian Somakpo, Act | West Program Officer in Benin; Translated from French and revised in English by Zubin Hill

“I feel like a solitary bird without any refuge … Day after day, my name is used like a curse,” said 30-year-old Amadou Tabe with tears in his eyes.

Born to a farming family with limited financial resources and raised in the N’dali commune, a city in north Benin situated at around 60 kilometers from Parakou, the largest city in Benin’s north, Tabe is the youngest of seven children. His time in school began normally and Tabe finished primary school in 2006. But in 2007, Tabe’s life changed drastically. He woke one morning to find that his right foot had swollen slightly. In the following days, that inflammation gradually spread from his toes to the rest of his leg.

"At first, it was only a little swollen,” he said, “but it got worse and spread up my leg with abscesses that turned into oozing sores.” 

Soon, Tabe found himself ostracized and rejected by classmates who avoided his company due to foot sores that were not healing. Relegated to a corner of the classroom, Tabe kept to himself. During recess, he watched with envy as his peers played soccer, a personal favorite. During his interview, he wore the jersey of Benin’s national soccer team.

As his foot grew, it forced Tabe to adjust his gait. With that adjustment came another change: he became the main topic of conversation whenever he appeared at the school gate. Unable to bear his peers’ stigmatizing looks or the mocking comments that nicknamed him "Adamou Big Feet,” Tabe dropped out of school when he was just 14 years old. 

“I was a good student,” he said, still in tears. “It was a very painful decision for me because I always dreamed of getting an advanced degree, such as becoming a doctor to make my family proud.”

Once out of school, Tabe struggled to learn a trade as his parents invested their limited funds into various treatments for their son. But rather than spurring a full recovery, Tabe’s left foot began to swell in 2013. Then, at 20 years old, Tabe found it increasingly difficult to move. 

“I felt cursed and resentful of the world. I wondered constantly what I could have done to deserve this fate,” Tabe said. “I was really desperate and sad.”

While Tabe received an official diagnosis of lymphatic filariasis (LF) from a health center in the neighboring town of Bembèrèkè, Tabe’s relatives convinced his parents that his disease was supernatural in origin and required sacrifices to ward off bad luck. From then on, Tabe was brought before traditional doctor after traditional doctor in search of a cure. 

"I was forced to undergo grueling rituals day and night, to rub potions on my feet which,” Tabe noted, “rather than curing me, caused a secondary infection with frequent, painful flare-ups." 

For Tabe, his experience led to a certain resistance towards traditional medicine—which displeased his parents. They gradually disengaged from him, scolding him for lack of gratitude and apathy.  Alone and without any support, he resorted to begging. 

In 2018, when Tabe was 25 years old, the disease spread to his scrotum. Luckily, Tabe learned of an opportunity for free surgery which could help relieve this latest condition. The only problem was that the surgeries were operated out of Saint Jean de Dieu Hospital in Tanguiéta—a town located over 250 km from N'dali. Still, Tabe made every effort to make it to his appointment. The operation was a success, which gave him hope, especially when the team promised to return in 2020 with a specialist for his feet. Unfortunately, the COVID-19 pandemic led to the suspension of all international travel. 

While chronic LF is incurable, some of its effects can be mitigated. For example, since 2019, ongoing health interventions in Benin have targeted the two morbidities affecting Tabe—hydrocele (fluid in the scrotum) and lymphoedema (swelling in the lymph nodes and legs).      This work, known collectively as morbidity management and disability prevention (MMDP), involves determining the location and number of people afflicted by these conditions. With this information, the government of Benin and partners can ensure that surgery is available to provide relief for hydrocele and to train persons affected by lymphoedema on a specialized foot washing regimen. Since 2021, USAID’s Act | West  project has included MMDP training modules in the curricula of nursing and medical schools. In the upcoming fiscal year, USAID’s Act | West project will also provide technical assistance to the Programme National de Lutte contre les Maladies Transmissibles (PNLMT or National Program for Control of Communicable Diseases) to estimate LF morbidity and manage identified cases of lymphedema in 14 districts in Benin. 

For Tabe, the success of the operation marked a turn for the better.

"After the success of the operation on my scrotum, I was beaming with hope, telling myself that, at last, I might have a chance at

relief from this cursed disease,” Tabe said. “But unfortunately for me, the COVID-19 health crisis occurred. I was completely dejected. I said to myself that it is better for me to accept that I will live with this evil disease until I die.”

Currently, a nurse at the N'dali Communal Health Center counsels Tabe on proper care for his feet at home to prevent painful

episodes. 

“Now that I’ve been following the nurse’s hygiene advice and trying to do some exercises, I have less pain. Still, I long with all my heart to be able to walk without a walker. This could change the way people look at me. But I still have to wait for that,” Tabe said.

Now 30 years old, Tabe lives alone and has not had children. While LF isn’t contagious, his efforts to find a partner are made difficult because of the stigma and misunderstanding that his disease can be passed on to others. For the past five years, his life has fallen into the same daily routine: wake up, travel, with difficulty, to an informal petrol stand that he operates along a local interstate. Thanks to this employment, Tabe can support himself without depending on charity. While people do not typically sell petrol along the roadside, Tabe believes that local officials are lenient with him because of his disability. 

Tabe has become an advocate for the prevention of NTDs. He is always glad when a new ivermectin distribution campaign begins. The community distributors frequently ask him to speak with community members who are hesitant to take the medicine. When caught early, LF is preventable and treatable with the safe, effective administration of medicines like ivermectin during these drug administration campaigns. 

As it is difficult for Tabe to get around, Tabe welcomes these visitors at his stand and explains the importance of taking ivermectin during the mass drug administration campaigns and how they help fight neglected tropical diseases. 

“I really appreciate when I am asked to explain the benefits of ivermectin to people. I don’t hesitate to show them my foot as an example. When community distributors call on me, I feel useful to my community and that makes me proud. My motto is ‘Never again will there be a big-footed Adamou in N'dali,’" Tabe explained.

Though Tabe’s life is difficult, he remains hopeful and grateful, and is waiting for a miracle. 

“I’m still young and medicine is progressing quickly. I’m counting on everyone who’s in contact with the outside world to keep me up to date. Then, I can benefit from the new advances,” he said.

While Tabe waits for a medical advancement, the health interventions around management of morbidity and prevention of disability by Benin’s national NTD program (NTDP) is working to help Adamou and others like him who suffer from lymphatic filariasis’s disabling complications.

Since 2012, USAID has provided continuous technical and financial support to Benin through the ENVISION/RTI and USAID’s Act | West projects—which organizes mass drug distribution campaigns against LF and tracks how these campaigns reduce transmission of disease. USAID support extended to an MMDP landscape analysis undertaken in July 2020 to develop a strategic response plan focused on improving support for people, like Tabe, who are affected by this disfiguring disease. In 2021, Act | West/USAID supported the hiring of a national consultant to draft a lymphatic filariasis elimination dossier, a document which aims to provide data to demonstrate that Benin has eliminated this horrible condition from the country.