"I can’t do my daily activities. I’ve been late to school. I have no crutches and I don’t own a wheelchair, which I need to borrow. It is very difficult to walk."
Amasi is 18 years old and has been infected with mycetoma for over a year. She lives in the village of Shadida Agabna, in Gezira State, a region south of Khartoum, Sudan that is heavily affected by mycetoma.
According to the Mycetoma Research Centre, in Khartoum about 20-25% of mycetoma patients are children. They often drop out of school and are unable to remain among their peers.
Stigma and shame can keep them hidden. In Amasi’s case, her peers lend a hand, pushing her around the village in a borrowed wheelchair and contributing collectively to her care.
More than a dozen people in Amasi’s village have had amputations due to mycetoma. Patients must travel long distances to the nearest city, Wad Medani, or even to Khartoum for surgery.
Due to the lack of safe and effective treatments for the fungal version of mycetoma, amputation is often the best (and only) chance patients have.
And all because of a simple thorn prick.
Eumycetoma is more difficult to treat than the bacterial form of the diseases.
Treatments are long, toxic, often ineffective, and expensive. The cure rate using available antifungals is only 25-35%, and treatment is often followed by surgical removal of the remaining mass, or may lead to amputation.
In 2016, WHO added mycetoma to the list of the 18 neglected tropical diseases, increasing the likelihood of better monitoring and research funding, although mycetoma remains among the most neglected of neglected diseases. An effective, safe, and affordable treatment appropriate for use in rural settings is urgently needed.
Patients often have recurrent lesions after treatment that may result in amputation.
- Slow-growing infection with fungal (eumycetoma) and bacterial (actinomycetoma) forms
- Eumycetoma, mainly endemic in Africa, is more difficult to treat
- Mycetoma is endemic in tropical and subtropical regions. The ‘mycetoma belt’ includes Chad, Ethiopia, Mauritania, Senegal, Somalia, and Sudan, as well as India, Mexico, Venezuela, and Yemen
- Attacks skin, deep muscle, and bone, and is believed to enter the body via thorn pricks or lesions on the feet
- Affects poor people in rural areas – in particular, young males aged between 15 and 30
- Causes devastating deformities, often resulting in amputation; if left untreated, it becomes chronic and can be fatal
- No global surveillance, so limited epidemiological data; the Mycetoma Research Centre in Khartoum, Sudan, has recorded over 8,200 patients since 1991