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These diseases of poverty strike the most marginalized populations and strain to attract the resources, funding, and attention of a world that is saturated by increasingly convoluted problems. Gaining visibility for neglected tropical diseases (NTDs) takes tireless and impassioned advocates — like Ahmed Fahal, a Sudanese surgeon and professor who has spent 3 decades bringing the devastating disease, mycetoma, to the world’s attention. NTDs create lifelong, community-wide debilitation and contribute to cyclic, intergenerational poverty in families, but Fahal’s efforts show how advocacy can make a difference in breaking the cycle.
We found ourselves inextricably drawn to these patients in Sudan, whose lives were so heavily impacted by this truly neglected disease — enough so that we emailed Fahal directly. What ensued was a multi-week dialogue that drew us even closer to the disease and the communities, and convinced us to make the trip ourselves to the Mycetoma Research Centre (MRC) at the University of Khartoum.
While there, we designed an mHealth-based surveillance and case management platform using CommCare, which had the capability to record basic demographics, address differential diagnoses, flag referrals, allow for follow-up, and run offline.
Mycetoma and those it impacts must continue to capture the attention of scientists and researchers who can help populate the treatment pipeline (through MycetOS) and expand vital social support programs that offset direct and indirect medical costs and chip away at corrosive stigma. Advocacy and an ever-growing network of passionate collaborators can break the cycle of poverty, making the elimination of diseases like mycetoma a real possibility. Our confidence in this is rooted in our own experiences, and the thrill of having witnessed the birth of a worldwide ‘mycetoma movement.’
Read the full article about mycetoma by Ezra Jerome at Global Health Now.