Mycetoma: A Social Stigma in Developing Countries

U.S Charge d’Affaires Lucy Tamlyn Visits Mycetoma Research Center

Haffiya Elyas

Mycetoma is a localized chronic granulomatous inflammatory disease caused by certain fungi or bacteria. If it is untreated early and appropriately, it usually spread to affect the deep structures and bone, resulting in massive damage, deformities, and disabilities. Currently, the available disease control method is early case detection and proper management. However, most patients present themselves late with immense progression in the disease, and for many of them, daring substantial surgical excisions or amputation are the only viable treatment options.

U.S Charge d’Affaires Lucy Tamlyn visited the WHO partnered-Mycetoma Research Center, which aims to provide medical care for patients, research, and education on the various aspects of this devastating tropical disease that affects so many Sudanese men, women, and children. CDA Tamlyn also toured Saa’id, a hub for vocational training; which enables recovering patients to acquire new skills to make a living. We appreciated the warm hospitality of Professor Ahmed Fahal and his team.

It is worth noting the Mycetoma Research Center was established in 1991 under the umbrella of the University of Khartoum. It was set up at Soba University Hospital to provide integrated high-quality medical care for Mycetoma patients, superb research, and excellent education and teaching in the various aspects of Mycetoma. The center is recognized globally as a world leader and an authoritative advisor in Mycetoma management and research.

Its mission is to eradicate Mycetoma, as a life-mutilating disease, through the advancement of medical care, research, education, and disease prevention.

Recently, Mycetoma was officially listed as a neglected tropical disease by the World Health Organization, which has brought the few researchers interested in the disease some much-needed support. Before 2016, the disease got so little attention that, ironically, it didn’t even make it on the neglected-diseases list.

The Mycetoma Research Center in Khartoum has seen almost 7,000 cases between 1991 and 2014, making it clear that Sudan is a regional and global hotspot for the disease. The illness is also present in Somalia, Chad, Ethiopia, India, Mauritania, Senegal, Venezuela, and Mexico.

The research center was established in 1991 by Ahmed Fahal—a general surgeon with a special interest in Mycetoma and tropical surgery—at the University of Khartoum. It has come to be recognized as a leading institution in Mycetoma research.

July 19, 2017 – Mycetoma or ‘Madura foot’, the fungal infection that destroys feet and limbs, is still a neglected disease, both in Sudan and around the world. Although the World Health Organization (WHO) and its partners have taken important steps in fighting this preventable disease, it continues to be a scourge for Sudanese people and patients worldwide.

“Mycetoma is a disease of poverty,” said the Ex WHO Representative in Sudan “The cost of diagnosis and treatment is relatively high, so those who cannot afford treatment suffer disproportionately, and those who do pay for care are at risk of falling into poverty.” Because the disease affects mostly young men, Mycetoma also harms youth productivity and employment.

Besides those involved in the public health field, a large number of media, artists, designers, and poets gave an acte de présence as evidence of Sudan’s wider social corporate responsibility.

Professor Ahmed Fahal, Director of the MRC, called attention to the launch of Clinical Trial Research as the first of its kind to address the cost-effective treatment of Mycetoma. He also recognized the Swiss-based NGO DiNDI as an important ally in the fight against Neglected Tropical Diseases NTDs: “We have successfully partnered with relevant local, regional, and international partners to support this research and all our other important work.”

WHO emphasized that an effective response to Mycetoma must also involve strong advocacy and prevention elements. In Sennar State, for example, one such intervention was highly successful.

To fight Mycetoma and improve general health, Sudan’s Federal Ministry of Health is currently finalizing a strategy to tackle all NTDs. Their approach includes research and concrete measures to improve access to safe water, a safe environment, proper management of solid waste, appropriate sewage, and a separation between human and livestock living spaces. Sudan’s government has also provided free treatment to 7000 Mycetoma patients.

The fungal disease Mycetoma, more commonly known as Madura foot after the Indian city where it was documented, enters the body through small cuts in the skin, most commonly on the feet of young men. Accurate data on the number of Mycetoma patients is difficult to obtain, in part because it is not a notifiable disease. Nevertheless, MCR has registered over 7200 Mycetoma cases in Sudan since 1991 and continues to track and reduce the disease’s impact.

The Vocational and Entrepreneurship Training Centre (SAA’ID):

To overcome all the above-stated problems, the Mycetoma Research Centre initiated SAA’ID to help the patients and the surrounding community be healthy and productive. SAA’ID is a hub for vocational and entrepreneurship training, business development, and entertainment, located within the Mycetoma Research Centre, University of Khartoum, Khartoum, Sudan.

SAA’ID has various vocational training programs such as Sudanese handcraft and leather industry, artisan-work, painting, graphics, woodwork, etc. Furthermore, it qualifies trainees on business development skills to become professional entrepreneurs and establish small developing enterprises.

Its main vision is to create equality and empowerment for the Mycetoma disabled and eliminate the social stigma around them and aims to create an appropriate environment for the Mycetoma amputees and disabled persons to learn and develop income-generating skills, perform and upgrade their talents, and be prepared to lead a new life of being productive, self-reliant and confident and avoid cured patients from being a burden fully dependent on their families or others. Patients suffering from other neglected tropical diseases and the surrounding community in the Soba area will also benefit from this project.

This project is expected to rehabilitate and train 150 participants of Mycetoma amputees and disabled patients and 100 individuals from the surrounding area yearly. Furthermore, the start of Micro, Small, and Medium Enterprises (MSMEs) will help to eradicate poverty, illiteracy, and stigma that affected the patients. Also, that will lead to funding generations to support other Mycetoma patients’ care.