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Guinea Worm Warrior’s Weapon is a Song

  • South Sudanese woman sings and claps her hands.

    Regina Lotubai Lomare Lochilangole is a social mobilizer, educating her fellow South Sudanese about preventing Guinea worm disease through her songs. (Photo: The Carter Center/C. Marin)

Regina Lotubai Lomare Lochilangole is a natural born motivator. She created an original song and dance to teach her South Sudan community about Guinea worm disease symptoms and prevention and rewards available for reporting suspected cases. The song was so effective that South Sudan’s Ministry of Health created a position for her within the Guinea Worm Eradication Program, titled social mobilizer. Lotubai now travels to different parts of the country to train other volunteers to become social mobilizers.

"Song and dance are common [within our culture] for occasions and ceremonies," she said. "We sing them in our villages and when working outdoors. I am happy these songs have reached to other areas."

The Carter Center leads the worldwide campaign to eradicate Guinea worm disease, working closely with federal governments, local communities, and an array of partner organizations. When the Center took the reins in 1986, there were an estimated 3.5 million cases annually; in 2020, just 27 human cases were reported.

Guinea worm disease (dracunculiasis) is a parasitic infection caused by a roundworm called Dracunculus medinensis. It is contracted when people consume water from stagnant sources contaminated with Guinea worm larvae. Inside a human's abdomen, Guinea worm larvae mate and female worms mature and grow. After about a year of incubation, the adult female Guinea worm, now up to a meter long, creates a painful lesion on the skin and gradually emerges from the body. Guinea worm sufferers may try to seek relief from the burning sensation caused by the emerging worm and immerse their limbs in water sources, but this contact with water stimulates the worm to release its larvae into the water and begin the cycle of infection all over again. (Guinea worm infections also occur in some animals, especially dogs, and the campaign is working to eliminate those infections as well.)

There is no medicine to treat Guinea worm disease nor vaccine to prevent it. The remarkable progress achieved to date has been accomplished through a massive effort to supply water filters in endemic areas, teach people how to use them, and contain every case to prevent contamination of water sources. Cash rewards provide an incentive to report suspected cases so they can be investigated quickly. People like Lotubai are essential to the effort.
Lotubai has personal experience with the disease: At one time, she had at least 10 worms emerging from her body. She says her experience keeps her motivated to work until the disease is eliminated from South Sudan.

"This Guinea worm disease is not — and never was — a good illness," she said. "It is very, very bad. It has given us a lot of scars and patterns on our body, all the time unwillingly. We have been losing parts of our flesh for nothing."

Makoy Samuel Yibi, neglected tropical disease director within the South Sudan Ministry of Health, says Lotubai made a strong first impression on him:

I first met Regina in July 2017 when I was in Kuron (Kapoeta East County) for a supervisory visit. I remember the day perfectly well, because my visit to other villages was quite depressing, due to poor performance by some program staff in other areas I had visited. 

We made a final effort in a cluster of villages that happens to be Regina’s area of coverage. Our spirit was really uplifted to find the awareness level of Guinea worm prevention and cash rewards for reporting Guinea worm cases was very high. In a visit by the field officer and program officers, we found women in one of the households singing a song in Toposa (the local language) that explains the different amount of cash incentives for Guinea worm cases, informers, and health workers.

When we moved to the next household, we found Regina doing her own visit and teaching the song to children, women, youth, and elders. That is when I learned she was the artist who composed the song.

Rarely in my 11 years working in the Toposa area have I seen a woman as assertive and brave as Regina. I was particularly impressed with her courage to mobilize adult men and elders to sing the song in a very patriarchal society, where women are expected to be submissive. It was remarkable to see her leading the men in singing her song under what is called the elders’ tree. I’m told that women normally do not dare to encroach the elders’ space, because this is where the men discuss very important issues of the village and community. She has actually broken the taboo in a positive way, and the men join her in the singing.

South Sudan reported just one human case in 2020. The program screened more than 280,000 people for the disease in 2020, investigated over 55,000 rumors, and found about 78% of people surveyed knew of its cash reward for reporting a case.

Lotubai's innovative work led to her traveling to the United Arab Emirates to receive the REACH Unsung Hero award in 2017 from the Crown Prince Court of Abu Dhabi. The Recognizing Excellence Around Champions of Health awards spotlight individuals who have made outstanding contributions toward reaching the end of infectious diseases.

Lotubai said she will continue sharing her songs "because the enemy is still around. … I am sure peace will continue to pass from one person to another, community to community, and so on. That is how it will spread."

Learn more about the Center's Guinea Worm Eradication Program »