Mycetoma: Meeting with Each and Every Person to Communicate Knowledge
Association for Aid and Relief, Japan (AAR Japan)
Losing Limbs to Mycetoma
In the Republic of the Sudan, the civil conflict between the South and the North came to an end in 2005, but many people are still suffering from landmines and unexploded ordnances buried during the civil conflict. Therefore, since August 2006, AAR has been providing mine risk education (MRE) and victim support to protect residents from landmines and unexploded ordnances. In 2012, when we visited the National Authority of Prosthetics and Orthotics to gather information on landmine victims, we found that many people in Sudan had lost limbs due to mycetoma in addition to landmines.
Mycetoma is an infectious disease that affects muscles and bones. It causes inflammation in parts of the body, such as hands and feet, and although it advances slowly, the affected area becomes very large and hinders daily life. Furthermore, if the infection reaches the bones, the pain becomes intense, and if the symptoms become particularly severe, it may be necessary to amputate the patient’s hands or feet.
Although Sudan is a country where research on mycetoma is progressing, even in such a country, mycetoma is not well known as an illness. For that reason, treatments without medicinal rationale are carried out which exacerbate the symptoms, and those who are infected receive discrimination. Therefore, in 2013, AAR Japan started activities to educate people of the symptoms, convey knowledge for preventing increases in severity of the disease, dispatch surgical teams and provide artificial limbs and rehabilitation
Passing on Knowledge to Each and Every Person
AAR Japan visits schools, mosques (Muslim temples), water fountains and houses where people gather in White Nile State and Sennar State, which have many mycetoma patients. Using illustrations, we carefully communicate knowledge about mycetoma, the importance of early treatment, and how to prevent increases in severity of symptoms.
In rural areas in Sudan, there is no means of communicating information to many people at once, such as television and newspapers. Therefore, in order to disseminate knowledge without misunderstanding, we have to meet and talk directly with people. There are only a few people who know about mycetoma, and everyone listens to us seriously. With limited opportunities to obtain new information, we feel that people really want to know more. And the messages transmitted are spread little by little through people.
On one occasion when staff were explaining about mycetoma as usual, there was a mother with very solid knowledge about the symptoms. We wondered where she knew the information. It seems that her child who heard the explanation from AAR Japan staff returned home and told the mother in the past. From this episode, we realized that the knowledge we conveyed steadily takes root.
We have talked about mycetoma with 250 to 600 people per year, and a total of 3,451 people so far.
Doctors Dispatched from the Capital Provide Surgery for Free
As the symptoms of mycetoma progress and the affected area grows, it becomes necessary to remove it by surgery, however surgery can only be received at specific hospitals in the capital Khartoum. The patients have to stay in the capital for several days for treatment. However, there are not many people who can prepare expenses for their transportation and stay, and who can leave home or work (mainly agriculture or livestock business) during that period.
Therefore, AAR Japan dispatches physicians and medical staff who have experience in treating mycetoma from Khartoum to villages, and surgical operations are carried out free of charge.
An 18-year-old man who underwent surgery had suffered from mycetoma from around 10 years old, and in particular it had recently become so painful it was difficult for him to sleep. However after surgery, he was able to get enough sleep for the first time in a long time and he became able to really enjoy eating again.
In addition, for those who have lost their hands and feet due to mycetoma, in particular those who are in economically difficult situations, we provide prosthetic limbs and rehabilitation for about a month at the National Authority of Prosthetics and Orthotics in the capital, Khartoum.
Our activities are steadily ongoing, however there are limits to the number of people to whom we can support. Nonetheless, we continue to work to tell as many people as possible about mycetoma and strive to offer opportunities for treatment.