Under the scorching sun of rural Rajasthan, a barefoot farmer walks through his field—a scene so ordinary it barely draws notice. But what neither he nor the world sees is that a tiny thorn prick on his heel will soon alter the course of his life.
The wound is barely noticeable—no pain, no swelling. Weeks pass. Then months. What began as a minor injury turns into a hard swelling, followed by oozing discharge. Eventually, the man can no longer walk, let alone work.
This is the slow, silent devastation of mycetoma—a neglected disease caused by fungus/bacteria that preys on the working poor. It creeps in through minor cuts and abrasions, often acquired during farming, wood gathering, or manual labour.
The people most affected—men and women in their prime working years typically due to lack of basic protective gears like shoes. But, in actual, lack of gears is just one of the reasons. People also get the disease on neck and hands because of the type of work they do, for instance, collecting woods with hands and carry on head etc.
Because the disease progresses without acute pain, many delay in seeking medical help. By the time they reach a health centre—if one is accessible—the infection may have already caused irreversible tissue and bone damage. Swelling, chronic discharge, and deformities become barriers not just to physical mobility but to employment, independence, and dignity.
In rural India, where healthcare access is patchy and poverty widespread, diseases like mycetoma don’t just attack the body—they rob people of livelihoods, social belonging, and hope, says Dr. Kavita Singh, scientist and South Asia Head at the Drugs for Neglected Diseases initiative (DNDi).
“Why is this disease with such difficulties in both diagnosis and treatment not often talked about. A disease that is chronic, destructive that can even invade bone and leave a patient limbless certainly should demand more attention?” she asks. A pertinent question.
While India is yet to take serious note of this disease, notably, the origin of mycetoma dates back to the mid-19th century, when for the first time Dr. John Gill first identified the disease in India in Tamil Nadu’s Madurai in 1842. He described the condition as Madura Foot or "foot tumours," a fitting name for a disease that causes the skin to swell, form nodules, and discharge abscesses filled with "grains."
“There have been sporadic studies case series and case reports published, but the condition remains vastly under-reported,” says Dr. Kavita Singh. “Patients often present late—when treatments or amputation is the only option.”
To add to the agony of the patient is huge economic cost the mycetoma inflicts on them. “Patients are often the sole earners in their families. The loss of mobility and prolonged treatment can push households deeper into poverty,” Dr. Kavita Singh laments.
In 2016, following sustained advocacy by researchers and institutions including DNDi, the World Health Assembly recognised mycetoma as a neglected tropical disease (NTD), a move aimed at spurring global action. Yet, progress remains painfully slow.
While India has lagged, Sudan once led the global response to mycetoma. The Mycetoma Research Centre (MRC) in Khartoum, founded in the 1990s by Professor Ahmed Hassan Fahal, became a world-renowned centre for treatment, research, and training. That progress, however, was shattered by recent unrest that severely damaged the facility.
“The loss is not just Sudan’s—it is a global health setback,” Dr. Kavita Singh rues. “India must learn from their leadership, but also from their vulnerability.”
Mycetoma is most prevalent among men aged 20 to 50, particularly in agricultural occupations, with a male-to-female ratio of about 3:1, adds Dr. Shivaprakash M. Rudramurthy, Professor of Medical Mycology at Postgraduate Institute of Medical Education and Research (PGIMER), Chandigarh. “In India, bacterial forms—actinomycetoma—are common in Rajasthan and the south, caused by organisms like Nocardia and Streptomyces. Fungal forms—eumycetoma, caused by Madurella—are more common in parts of Rajasthan and central India.”
There are regions, like Eastern India, where mycetoma cases have been reported too but remain under-researched and under-diagnosed which can lead to severe deformities, disabilities, and even limb loss, says Dr. S Anuradha from Maulana Azad Medical College, Delhi, one of the co-authors of the study titled 'Clinical and Epidemiological Profile of Mycetoma Foot: Observations from Eastern India.' The study reported ten cases from Bihar and West Bengal.
Mycetoma foot requires multidisciplinary management involving dermatologists, infectious disease specialists, orthopaedic surgeons, and microbiologists for optimal outcomes, say the authors of the study. These included Dr. Rupak Chatterjee from Bijoygarh State General Hospital, Jadavpur, Kolkata, Ipsita Pramanik, an independent researcher from Kolkata, Malabika Biswas, Shatavisa Mukherjee and Netai Pramanik, all from School of Tropical Medicine, Kolkata, and Jaya Chakravarty from, Institute of Medical Sciences, Banaras Hindu University, Varanasi. The study is published in journal Afro-Egyptian Journal of Infectious and Endemic Diseases (AJIED) last year.
“This may just be the tip of the iceberg,” Dr. Biswas comments, highlighting the gravity of the situation.
Dr. Shivaprakash opined that microscopic grain analysis remains the primary diagnostic method in rural centres, though it is limited by contamination and grain viability issues.
“Advanced testing—histopathology, culture isolation, even molecular sequencing—is often out of reach in low-resource settings,” he notes and adds that most reported cases come from Rajasthan, Tamil Nadu, Andhra Pradesh, Kerala, and West Bengal. “Patients from Bihar and Kolkata often seek care in hospitals across Tamil Nadu—in Madurai, Coimbatore, Chennai, and Vellore.”
It is commonly seen in tropical and subtropical areas like Sri Lanka, India, Pakistan, Sudan, Somalia, and Mexico, and may be caused by filamentous bacteria (actinomycetoma) or fungi (eumycetoma).
Treatment is also prohibitively expensive. “Itraconazole, the most effective antifungal for eumycetoma, remains costly and out of reach for most. Surgery is rarely available due to a lack of trained specialists.”
He adds, “Many healthcare providers are unfamiliar with the disease, leading to suboptimal or inconsistent treatment. In fact, treatment can take up to a year and may involve surgery. Educating communities about early symptoms and wound care is essential.”
Dr. Archana Singal and Dr. Sheetal Yadav, in their study published in the Indian Journal of Paediatric Dermatology in 2022, noted that children too are affected by this condition, contrary to prevailing perceptions.
Dr. Kavita Singh stresses the need for a comprehensive national strategy. “We need accurate data, region-specific surveillance, and access to quality diagnostics and affordable medicines. A unified protocol for diagnosis and treatment is long overdue.” Including it in the algorithm of Neglected Skin Diseases in the affected areas should also be considered.
Mostly even doctors are not much aware of the diseases so they are not giving treatment systematically so that is the problem. Also, many healthcare providers in India use less effective medicines or don’t combine treatment with surgery. As a result, even patients who get medical care often don’t recover fully.
Clearly, since not much attention is being paid to this debilitating disease, surveillance is difficult. Dr. Shivaprakash propose integrating it into existing programmes like the National Leprosy Eradication Programme (NLEP). Auxiliary Nurse Midwives (ANMs) can be trained to detect early signs of mycetoma during community visits, helping catch the disease before it causes irreversible damage.
As Dr. Arunaloke Chakrabarti, a leading expert in medical mycology and former Head of Medical Microbiology at PGIMER, Chandigarh, points out: with the WHO having officially included Mycetoma in its list of Neglected Tropical Diseases (NTDs) in 2016, it is now imperative for the Government of India to declare it a notifiable disease and formulate a clear national strategy for its control, elimination, and eventual eradication.
“The vulnerable population in rural areas is gradually becoming aware about protective measures like wearing shoes but more needs to be done. There are still significant gaps in our understanding of mycetoma’s epidemiology and management,” he says, adding, targeted research and improved data collection is key.
He also warns of an emerging threat: “We’re already seeing antifungal resistance in other fungal infections. If we ignore mycetoma, the same could happen here—turning an already neglected disease into a much more dangerous one.”
Dr. Saurabh, a practicing clinician, too pointed out lack of a national database. “We don’t even know how many patients are being treated—or how,” he says. Taking a global view, Professor Ahmed Hassan Fahal, Professor of Surgery at Mycetoma Research Centre, University of Khartoum, Sudan offers a stark assessment: “Mycetoma embodies all the characteristics of an NTD. It strikes the poorest of the poor in remote areas, people with little visibility or political voice.” In his blog, he adds that stigma is a serious barrier to timely care—especially for women and children. “Many hide the disease out of shame, and by the time they seek treatment, the damage is already advanced.”
Still there is a ray of hope. Dr. Kavita Singh concludes with cautious optimism: “Yes, mycetoma is one of India’s most neglected health challenges. But it is not untreatable. With strategic investments in surveillance, diagnosis, treatment, and public education, India can change the trajectory—not only for its own citizens but for endemic regions across the world. We can choose to lead.”
The question remains: will the government act decisively to break the silence around mycetoma—or allow the neglect to continue?
The Way Forward
Awareness and Education:
Targeted campaigns for both healthcare providers and communities are vital, particularly in rural areas. NGOs, local governments, and community leaders must be part of the effort.
Diagnostic and Treatment Infrastructure:
Investment in diagnostic facilities, clinical training, and specialist care—especially in endemic regions—is crucial.
Prevention and Public Health Measures:
Use of protective footwear, wound hygiene, and basic first-aid awareness in farming communities can help reduce incidence.
Policy Integration and Funding:
National-level commitment, inclusion of mycetoma in public health frameworks, and sustained funding will be essential to tackling the disease effectively.