Sudan: Grappling with Mycetoma, an Infectious Disease Still Unfamiliar to the World Population

Mycetoma is an infectious disease and is one of the tough issues that Sudan is tackling currently. An  staff member of AAR’s Sudan Office, Ryohma Yamagishi, reports the latest on this challenges presented by Mycetoma, including AAR’s efforts and activities to cope with this lingering illness.

Causes and infection routes still unidentified
Mycetoma is an infectious disease whose peculiar variety of germs exist in the soil and pass on to humans through abrasions of hands and feet, and start affecting muscles and bones. It triggers inflammation within the body at first, and the affected area grows gradually larger over some a period of time. In the later stages of Mycetoma, when the inflammation gets rather widespread, sufferers not only find it difficult to manage their daily lives but also come to be bothered by acute pain when the infection reaches as far as the bone. In the worst cases, the victim could ultimately lose his or her life.
In the earlier stages where patients have not yet suffered serious damage, they can be cured of this illness with the help of appropriate medical treatments including medication. When the illness progresses to a critical condition, however, they might unfortunately have no choice but to have their limbs amputated. The biggest concern about Mycetoma is that what causes the conditions mentioned above and how the infected person contracted the illness have not been fully identified yet.

A boy, who underwent an operation on his hand which had been infected with Mycetoma, being attended to by his mother. Andalus village of the White Nile State  (November 16, 2017)

Sudan has suffered from a particularly high morbidity rate of this persistent and progressive disease, Mycetoma. This has allowed Sudan, however, to become one of the best-prepared nations in the world with measures against its Mycetoma infections. Despite the prevalence of the disease in Sudan, Mycetoma has not yet become a disease widely familiar among the Sudanese, meaning that the affected sometimes end up  being given inappropriate medical treatments. Those infected also experience discrimination in their community.
Putting all these factors into consideration, AAR Japan launched substantial supports to Sudan in 2013 and started to provide preventive measures against Mycetoma as well as medical treatments to cure those infected with this illness.

Visiting door-to-door to provide knowledge and information to local people
AAR Japan has provided, mostly within and around Andalus Village of the State of White Nile, activities to let people acquire greater knowledge about Mycetoma, to allow them to understand the significance of securing the earliest possible opportunities of getting medical treatments. These activities also include preventive measures against this disease and have allowed seriously ill patients with advanced infections to undergo medical procedures.

During the three days’ campaign and activities in which I took part in November 2017, we transmitted the knowledge about Mycetoma to 1,726 villagers in total and provided opportunities to have surgery for 35 of the affected locals in the area.
As to the knowledge about Mycetoma, AAR’s staff members paid visits to individual houses and community spaces in this area and provided villagers with detailed explanation with the help of visual aids.

Most of the cases related to Mycetoma infections have been reported in economically underdeveloped areas of Sudan. Andalus Village, where we performed our mission, is also located in such an area. While it might sound steady but too slow a procedure that we visited houses one by one and explained things in detail to locals at each household, but we regarded it as the most efficient working method to meet and talk to residents in person, owing to a lack of mass media such as TV sets, radios or newspapers available in the village. The AAR Japan team thought that the above-mentioned method would enable us to convey information and knowledge to a good number of residents at once without giving misleading contents or creating any misunderstanding among them.
We found that only a few locals had known Mycetoma and all those who participated in our activities were well-focused enough to receptively listen to our presentation during the campaign. I felt that all of them assumed the kind of positive attitude enabling them to absorb as much of the new information as possible, as they felt that the information and knowledge previously available to them had been quite limited.

Our key message for locals has gradually spread among more and more of the residents via human routes over time.

Enlightening activity at a local elementary school in an effort to transmit facts and knowledge about Mycetoma to pupils, while Ryohma Yamagishi standing still and alert behind the lecturer.
Andalus village White Nile State (November 18, 2017 )

While one of the AAR’s staff members was talking about Mycetoma in the presence of residents one day, he found a mother who already possessed a very solid knowledge of the conditions related to this disease. When he asked her where she had acquired that knowledge and information, as he hadn’t expected such a case, she said that her child had once heard another AAR staff member’s presentation about Mycetoma and shared the information he learned. This episode has impressed me greatly and provides evidence that the facts and knowledge about Mycetoma that AAR prepared for locals have steadily taken root among villagers.

Surgeries were provided to patients for free by doctors whom we had dispatched from Khartoum, capital city of Sudan.
It remains difficult to prevent the infection of Mycetoma due to reasons such as insufficient transmission of knowledge and information about this disease, and also a lack of a solid medical system that can fully cope with this issue. It will continue to be essential for the villagers to have access to medical treatments after their initial infection, including immediate care for the affected parts of their body. Especially in the case where the infection has grown larger as the disease itself develops, it must be removed completely through surgery.
Additionally, Mycetoma is not yet well known even among doctors in Sudan and medical operations are a possible choice for the affected only in designated hospitals in the capital city of Khartoum. Andalus village is situated far away from the capital city, which might force the patients to stay there for several days when they seek after medical treatments. Very few villagers can come up with the travel  or accommodation funds required for their long journey to the capital. Also, only a few people can leave home and their daily housework chores behind them, or take days off from their occupations (mainly agricultural fields and dairy farms), which leads to the frequent case where they give up opportunities of getting medical treatment after having been infected with Mycetoma, in which ultimately leads to them being in serious condition.

AAR had doctors and medical staffers dispatched from Khartoum and provided surgeries for nothing to cope with Mycetoma. Andalus Village of White Nile State (November 16, 2017)

To assist with this, AAR dispatched to Andalus Village doctors and medical staffers who had treated patients infected with Mycetoma and had them perform surgery for free to the patients. Those who had been seriously ill enough to need surgery seemed to have put many uneasy days behind them, as after the surgery, many of them had a very serene and bright expression on their faces despite some lingering pain from their operation, which fact very much attracted our attention.
In the case of an eighteen-year-old youth who underwent the surgery, he developed Mycetoma around the age of 10 and lately suffered from acute pain, which deprived him of sound sleep. After the operation, he said that he was able to have a good sleep for the first time in ages and was also able to find the food prepared for him palatable and delicious.
He told us that there were still many more people possibly suffering from untreated Mycetoma in his neighborhood and he would be sure to advise them to seek professional care and treatments at medical institutions. 

A youth who had been infected by Mycetoma said, “Thanks to the surgery, I have been able to have enough sound sleep for the first time in ages and also been able to find meals prepared for me to be palatable and delicious.”
Andalus Village, White Nile State (November 16, 2017)

We have provided various activities in an effort to realize our supportive mission to visit areas dealing with the issue of Mycetoma, and probed the status  of locals’ lives individually so as to the identify complex factors with which they were facing. They were leading everyday lives with thr painful idea that they might continue to be exposed to a risk of developing Mycetoma at any time in their daily environment.

The efforts of our group and individual meetings with those living with a pressing risk of developing Mycetoma in their daily lives have enabled us to better understand how uneasy they have been feeling for lack of information. We further understand how anxious they have come to feel when finding themselves without opportunities for surgery despite their earnest wishes for medical treatment.
Our rescue efforts could be translated as slow but steady, for we have provided the scheme in which we try to stay closely attuned to individual circumstances of villagers. Seeing the results of our work, I feel that such laborious efforts have been sufficiently rewarded.

Children in the village with notebooks in their hands, which AAR has distributed and that contain information and knowledge about Mycetoma.
Andalus Village( November 17, 2017)
Ryohma YAMAGISHIAAR Japan Sudan Office
Ryohma YAMAGISHI has worked at AAR Japan Sudan Office since July 2017.
At a college, he majored in social development and international law.
Working for the Japanese Red Cross Society, he carried out a research on peace formation at a graduate school. After working for the Japanese Embassy in Bosnia as a research specialist, he has joined AAR Japan.
He is from Kyoto Prefecture.
(Profile as of the date of the article)