Mycetoma is a devastating disease characterized by severe and stigmatizing deformities, disability, and high morbidity. Mycetoma affects the poorest populations in the most remote areas, both men and women; 20-25% of patients are children, who become stigmatized and often drop-out of school. The disease can have a serious negative socio-economic impact on patients, families, and communities, and puts a heavy burden on health systems. The psychological impact of mycetoma cannot be overemphasized; many patients become depressed and need psychological support, in particular children who drop-out of school and their peer group. Health systems are often not able to offer psychological support and in many patients the depression remains undiagnosed.
In 2013, mycetoma was recognized by the WHO as an ‘other neglected condition’ alongside the official list of 17 Neglected Tropical Diseases (NTDs); however, this particular status, while helping to raise awareness of the disease, can limit the possibilities of major funding and R&D opportunities. This is a chronic, very slowly progressing disease that does not gain media attention because of outbreaks, which contributes to its neglect. There are no control or prevention programmes and the extent of the disease worldwide is not known. It is thought that infection may be due to thorn pricks, with the infection coming from the soil or animal dung, but there are no comprehensive studies available in order to have a definitive theory.
The causative organisms of mycetoma are distributed worldwide but are endemic in tropical and subtropical areas of what is coined the ‘mycetoma belt’, which includes, amongst others, the Bolivarian Republic of Venezuela, Chad, Ethiopia, India, Mauritania, Mexico, Senegal, Somalia, Sudan, and Yemen; in fact more and more countries outside the belt are reporting cases. There are two causal agents, a bacterial form (actinomycetoma), which is prevalent in Middle and South America, and which typically responds well to treatment with antibiotics, and a fungal form (eumycetoma), which is mainly endemic in Africa and is treated with antifungals and surgery with very limited success. Often amputation is needed and despite this there is a high chance of recurrence.
Mycetoma Cases Reported
Van de Sande WWJ (2013) Global burden of human mycetoma: a systematic review and meta-analysis. PLOS Negl Trop Dis 7: e2550. doi: 10.1371/journal.pntd.0002550
There are no simple diagnostic tests to use in mycetoma-endemic villages. Most of the available diagnostic tests require a well-equipped lab and skilled staff, requiring patients to travel to referral hospitals for diagnosis.
Mycetoma patients and doctors share their stories
Mycetoma is most commonly seen in the body’s extremities, the back and gluteal region, which become swollen and disfigured. The disease can have a devastating effect, developing into a chronic infection of the skin tissues, spreading through the infected limb resulting in its destruction, deformity, and loss of function, which may be fatal. If caught early, the lesion may be removed surgically. However, the disease progresses relatively silently causing little pain, meaning that people may delay seeking treatment. The currently used drug treatment has a 25-35% efficacy rate at which point amputation of the affected limb become necessary. Secondary bacterial infection is common, which may adversely influence outcome and requires additional prolonged antibiotic treatment. Infection is not transmitted from human to human.
Treatment requires a prolonged course of antifungals and extensive and destructive surgery. The currently available antifungals are ineffective and have serious side effects; treatment with itraconazole takes approximately twelve months and is very expensive for patients and health authorities in endemic areas, contributing to a high drop-out rate.
A more effective, affordable, shorter-term treatment appropriate for rural settings is urgently needed.