Central African Republic 2009 © Raghu Venugopal/MSF
Listen to the song about sleeping sickness:
With help from a patient and national staff, Kathryn Sisterman, a U.S. nurse on her first assignment with Doctors Without Borders/Médecins Sans Frontières (MSF) in northern Central African Republic (CAR) developed a song to teach people about human African trypanosomiasis, also called sleeping sickness or trypano. Here, she describes how the song came to be.
Greetings from Maitikoulou, Central African Republic.
It has been five months since I started as a nurse for MSF in Maitikoulou, northern CAR. Our project is in a rural, rebel-controlled area where MSF is the only health care provider—and the only international presence in general. We are here mainly to treat sleeping sickness, which is, in short, a deadly disease caused by the bite of the tsetse fly. Of course, there are numerous other health needs, including pediatric malnutrition and severe cerebral malaria. Our patients walk many kilometers and sometimes cross rivers by pirogue—a small, flat bottomed boat—to access our free health services.
Sleeping sickness is a neglected and deadly disease that affects 36 countries in sub-Saharan Africa. Transmitted through the bite of tsetse flies, which harbor the parasite for the disease, sleeping sickness, if left untreated, can infect the central nervous system and lead to confusion and violent behavior or convulsions, ending finally in coma and death. In 2009, NECT (Nifurtimox-Eflornithine Combination Therapy), a new and highly effective treatment became available and was added to the World Health Organization’s (WHO) list of essential medicines.
Sleeping sickness affects between 50,000 and 70,000 people per year, according to WHO.
I knew nothing about this country before I came here. But now that I am here, I am finding many things fit exactly what I was looking for and at the same time I am discovering joy in things that I didn’t realize I was looking for. The people here are so physically and emotionally strong. I am lucky to share some of their most personal moments, like birth, sickness, and healing. The local language in this region is called Mbai. I made a short song in Mbai because the patients in Maitikoulou love singing, and the local people here are never too shy to perform.
Each night, I ask the patients to hang their bed nets because some of our malnourished children, who didn’t already have malaria, were catching it in our ward. To encourage the mothers to use the bed nets, I started to tell them, “Mosquitoes will give your children malaria.” I repeated that constantly, and then as a joke one day, one patient sang it back to me, put it to a little church tune, and then we kept adding more verses.
Public health is more effective when it is also a little bit fun, so we have created verses that help capture this sentiment. The first line is, “Mosquitoes will give your children malaria.” Another line is “Sleeping sickness is caused by the bite of the fly. Trypano is serious and without treatment people will die.” And the last line is, “Maitikoulou wishes you to do well. Médecins Sans Frontières wants you to have good health.”
I teach this song to people whenever we do community outreach activities, like the village-based screening for sleeping sickness, where we also screen for malnutrition, and do vaccination registration. People line up and wait several hours to get the rapid screening test. Those who are positive take the illness very seriously; they come to our center from far away, then they stay for one to two weeks to complete their treatment.
Community outreach is definitely my favorite part of the job. The national staff team also has a lot of fun—they are so proud of their work, their knowledge, and the fact that they are helping their brothers and sisters. The village visits are also a great opportunity to see some of our former patients again.
Just recently, we were able to play and spend the day with a little boy who had severe, neurological sleeping sickness in June. We all remember him well because he was so sick. He had trouble walking, his speech was totally disordered, he slept all day, and he screamed all night. The patients in the beds next to him complained about him, so during the night his father would hold him and walk up and down the dirt road so that the other patients could get some sleep. But now he is cured. The team and I got to watch him running around and playing with the other children. His father was really happy and said that he has returned to being a normal little boy.
By the end of the day he and the other village children had memorized my entire public health song. Whenever I hear children sing it, it never fails to lift my spirits and to remind me that it is all worthwhile.