Mycetoma: The Invisible Disease Beneath India's Soil

When he was 22 years old, Amar Ram, a college graduate from Chhattisgarh in central India developed what seemed like a recurring abscess on his foot. Nearly six years and multiple misdiagnoses later, doctors identified it as mycetoma, a disease that he had never heard of. Today, after three failed surgeries, a ruined career, and severely diminished quality of life, amputation remains the only option for the 32-year-old who said, “On some days, the pain is so severe that I can't get out of bed.”

Mycetoma can be caused by both fungi (eumycetoma) and bacteria (actinomycetoma). When a break in the skin occurs—from a thorn prick, a splinter, a cut from a farm implement, or even an insect or snake bite—mycetoma-causing organisms in the soil can enter and infect the underlying tissue. The infection can destroy skin, muscle, and bone, often causing permanent disability. While fungal and bacterial mycetoma have similar symptoms, bacterial mycetoma can progress to a bone infection more quickly, while the fungal infection is more difficult to treat. Patients commonly include farmers and rural workers who walk and work barefoot. Even though the common patient age group is 20–50 years, India has reported cases in infants as well.¹

Amar Ram did not recall a specific injury that led to his condition, but he thinks it likely started with a thorn prick, which are common occurrences while working on his family’s farm. This led to painless swelling and years of visits to clinics where he was misdiagnosed and treated for actinomycetoma when he actually had the fungal type. His experience, however, isn't an outlier. Mycetoma is often misdiagnosed as tuberculosis, lipomas, and chronic abscesses in India, despite it being one of the world’s major endemic countries for this disease.

“Mycetoma is still a neglected disease in India because of underdiagnosis and misdiagnosis rather than a low number of cases,” said pathologist Yogi Raj Joshi. Joshi serves as additional principal at the Rajasthan state government-run Dr Sampurnanand Medical College in Jodhpur. This medical facility, with 10 attached hospitals, is the nodal center for mycetoma care in west Rajasthan, reporting 2–3 average cases per month.

Most published reports of the condition in the country originate from Rajasthan, Tamil Nadu, West Bengal, Andhra Pradesh, and Maharashtra, but the exact geographic distribution remains uncertain.²

Even a decade after the World Health Organization (WHO) recognized mycetoma as a Neglected Tropical Disease, it continues to evade India's healthcare system.

“Mycetoma is a debilitating fungal disease that can lead to amputation. Yet India has no national surveillance program, standardized treatment guidelines, or patient registry for the disease,” said Sanjay Sarin, Asia Continental lead and South Asia director at Drugs for Neglected Diseases Initiative (DNDi), a non-profit involved in research and development of treatments for diseases receiving limited attention. Doctors, researchers, epidemiologists, and patients want to know what can be done to resolve this devastating burden.

Why Mycetoma Remains an Ancient Neglected Disease

While the WHO only recognized mycetoma as an NTD in 2016, the disease has been documented in India for centuries. It has mentions in the Atharva Veda, an ancient Hindu sacred text dating to around 1200 BCE–1000 BCE, and it was first described as a distinct clinical entity in Madurai city by the British surgeon John Gill in 1842 who called the condition the “Madura Foot.”³

The mycetoma belt has been traditionally reported between the latitudes of 15^◦S and 30^◦N. Eumycetoma is more commonly associated with drier regions, while actinomycetoma is more prevalent in humid areas. Both types are reported across Africa, Asia, and South America, while actinomycetoma accounts for most cases in Mexico and Central America.⁴

Epidemiologically, a 2013 literature review ranked India third globally with 1,392 cases, while a broader 2024 global review of 12,379 eumycetoma cases indicated that Sudan, Senegal, and India report the highest numbers.^2,3 However, true disease burden remains hidden due to fragmented hospital data and a lack of integrated public surveillance.⁴ This leaves diagnosis and treatment largely dependent on a handful of tertiary hospitals and individual specialists.

Continue reading below...

Article

Collecting Insights into the Vaginal Microbiome and Menstrual Health

Supriya Mehta discusses how molecular detection and sample collection advances strengthen microbiome research.

Read More

The closest effort to a national database in India is the Indian Council of Medical Research’s (ICMR) MycoNet Inpatient Clinical Registry, developed primarily to track invasive fungal infections in hospitalized patients. In its 2024–25 annual report, ICMR reported 61 cases of eumycetoma and chromoblastomycosis, a long-term skin and tissue infection caused by pigmented fungi, through the registry. However, it did not disaggregate the two diseases, provide state-wise figures, or report actinomycetoma separately, limiting its usefulness in estimating India's true mycetoma burden. Earlier, a 2024 MycoNet protocol paper had reported 29 mycetoma cases from its eight Advanced Mycology Diagnostic and Research Centers and called for systematic surveillance.⁵

Limited Awareness of Mycetoma Disease Drives Delayed and Misdiagnosis

While specialists generally recognize mycetoma, doctors at primary and community health centers, along with frontline health workers who serve rural populations often lack the experience to identify it early.

“That's where patients first present, and that's where we're missing the diagnosis,” said Brajesh Patel, a senior medical officer at District Paota Hospital, a public healthcare facility in Jodhpur. By the time many reach Patel’s packed dermatology wing, their conditions have progressed, with daily wage workers making up most patients with fungal infections.

To bridge this gap, Borna Nyaoke-Anoke, the head of the Mycetoma Program at the DNDi, suggested that community health workers be trained in basic mycetoma screening so that patients can be identified early.

The mycetoma infection usually begins as a painless swelling that gradually develops into lumps, abscesses, and draining sinuses. The pus contains tiny colored grains, which are clusters of the disease-causing organisms.

However, mycetoma doesn't always present with its classic sinuses and grains symptoms, said Joshi, who also heads the pathology department at Sampurnanand Medical College. “We treated a patient who had swelling in his hand but no sinuses or discharge. It was misdiagnosed as lipoma. Only after removal of the affected tissue and histopathological examination it was found to be a case of eumycetoma,” he recalled.

Amar Ram’s ordeal exemplifies the dangers of delayed and misdiagnosed mycetoma. He said that he first developed symptoms in 2016 but reached the state-run Medical College Hospital, Raipur, only in 2020, where the treatment showed no improvement in two years. He then approached doctors at the Raipur campus of All India Institute of Medical Sciences (AIIMS), India’s premier central government-run medical network. Coming from a low-income farming family, Amar said the repeated trips to Raipur, which is 500 km away from his village Ankira in Jashpur district, and prolonged treatment have pushed the household into debt.

His consulting dermatologist at AIIMS Raipur, Satyaki Ganguly, said that although the presence of grains suggested mycetoma, there was confusion regarding the type as the grains were pale-colored, which is more common in actinomycetoma. It was only in 2024 that the AIIMS doctors confirmed eumycetoma after genome sequencing, and they revised his treatment. Genome sequencing of the mycetoma agent is primarily an advanced diagnostic, rather than a routine diagnostic test. It requires high-end laboratories and equipment with trained personnel, so it’s mostly available only in tertiary hospitals or medical research centers rather than in village or district-level hospitals.

Doctors at AIIMS Raipur cited cases where patients visited the facility after taking years of treatment for cutaneous TB, which is a rare form of extrapulmonary tuberculosis, or chromoblastomycosis.

“So, treatment shouldn’t begin empirically whenever mycetoma is suspected,” said microbiologist Archana Keche of AIIMS Raipur. “Species-level diagnosis is no longer an academic exercise; it directly determines patient management,” she said.

“While histopathology can quickly determine if an infection is fungal or bacterial, microbiological confirmation is essential for identifying the exact organism,” Keche said, noting that cultures, however, take two to six weeks due to slow organism growth, and many hospitals lack the specialized laboratories and expertise required.

Current Mycetoma Treatment Strategies

Treatment outcomes, especially for eumycetoma, are suboptimal, as current therapies mostly see low cure and high recurrence rates, long treatment duration, and high patient dropout rates, according to Ahmed Hassan Fahal, founding director of Mycetoma Research Center at the University of Khartoum in Sudan. Fahal’s research, spanning over three decades, has shaped global treatment protocols and clinical trials for mycetoma across endemic regions in Asia and Latin America.

Itraconazole is considered the ‘gold standard’ for treating eumycetoma, but it is often unavailable or unaffordable in many endemic regions. Surgery often becomes necessary because antifungal medicines penetrate poorly into the dense masses of fungal grains. Actinomycetoma is treated with prolonged combination antibiotics, such as cotrimoxazole with amikacin or other agents, and it is often curable if diagnosed early.

Kishan Ram, a 54-year-old electrician from Rajasthan's Jalore district, was diagnosed with eumycetoma in his right foot at an AIIMS center in 2025. He said he was prescribed itraconazole but stopped taking the tablets after three to four months. When the infection recurred a year later, he sought treatment again at one of the hospitals attached to S.N Medical College. “I have continued taking medicines. The grains have disappeared, and pain has since reduced,” Kishan said. His case highlights the long treatment course and the risk of relapse when therapy is interrupted.

Increased Risk Factors and Broader Infectious Agents Present New Mycetoma Challenges

Clinicians note that barefoot walking is no longer the sole risk factor of the disease. Madhu Rengarajan, a dermato-mycologist at Madras Medical College, said she reported mycetoma in diverse occupations like construction and woodcutting.

“We also find patients with infections in atypical sites such as ear, abdominal wall, or scalp, following minor trauma like using twigs to clean ears, laying down on fields, or carrying sticks,” said Rengarajan, whose research focuses on fungal infections and emerging antifungal drug resistance patterns in India.

She recalled treating a mycetoma case where a college student had developed the fungal infection in her forehead and eyelid, giving her severe headaches.

On the pathological front, Keche said, “We're increasingly recognizing a broader range of organisms causing mycetoma than traditionally appreciated.”

A 2024 study by Keche and her team documented how they found possibly the first reported case of mycetoma caused by a member of the Pestalotiopsis species in India.⁶ Pestalotiopsis are fungi that primarily act as plant pathogens, with only a handful of human infections reported worldwide, mostly corneal and nail infections.

Growing urbanization in India is also leading to new problems. “Rapid urbanization might offer better access to tertiary care, but it can mask the rural burden, as displaced or migrating agricultural laborers may carry chronic, untreated infections into peri-urban slums where local health systems are unequipped to diagnose them,” said Suman Rijal, the director of Department of Health Promotion, Disease Prevention and Control at the WHO-South-East Asia Regional Office.

Weakened immunity can also alter how the mycetoma infection presents. “We've encountered unusual multifocal disease in immunocompromised patients,” Ganguly said, recalling a particularly challenging case in a patient undergoing cancer lung treatment.

“One Health” Approach, Surveillance, and Better Treatments Promise a Hopeful Future for Mycetoma Patients

An overlooked key to tackling mycetoma may lie outside hospitals, believe researchers who are increasingly viewing the disease through a One Health lens.² One Health is an approach that recognizes that the health of people is closely connected to the health of animals and their shared environment.

Climate change is shifting rainfall patterns and driving land degradation, potentially altering the geographic distribution of the mycetoma pathogens, Rijal said.

“Mycetoma is one of the biggest examples of why we need a One Health approach. The organisms are found in the environment—in soil, vegetation and even animal dung, but our response begins only when patients reach hospitals,” said Nyaoke-Anoke, who has studied mycetoma’s impact on vulnerable populations in Africa and oversees DNDi’s mycetoma drug trials in India and Senegal.

“We need to understand the disease in animals, how it reaches humans, and how we can prevent it in the environment.”

A national surveillance system will remove one of the biggest barriers to mycetoma diagnosis and treatment. Once such a system is in place, surveillance indicators can be integrated into the national health information system, followed by training healthcare workers for timely detection, accurate diagnosis, and consistent reporting, Rijal said.

Sudan is the only endemic country that has established a national mycetoma control program and surveillance network. In India, DNDi is trying to close the data gap by documenting mycetoma cases in 25 hospitals over the past decade, capturing patient demographics, diagnostic and management practices, and treatment outcomes, said Sarin. “These findings will help design clinical trials for developing shorter, safer, and more effective mycetoma treatments,” he added.

Right to Information requests to India’s health ministry, which require public authorities to disclose information under the country’s transparency law, and emails to the ICMR did not elicit a response by the time of this story’s publication.

As far as the WHO is concerned, while awareness has improved through its programs, “progress has been much slower” than hoped, particularly in surveillance, sustainable funding, and making mycetoma a reportable disease, Nyaoke-Anoke said.

In 2019, the WHO assessed gaps in countries’ efforts to tackle NTDs, including mycetoma, creating a baseline from which to measure progress. Four years later, the Global Mycetoma Working Group—a network of researchers and public-health experts working to improve mycetoma prevention and care—revisited four priority areas: diagnosis, access and logistics, advocacy and funding, and monitoring. All four were again rated at the lowest level of progress, suggesting little improvement since 2019.⁷

Meanwhile, the search for better mycetoma treatments is also gathering momentum. In collaboration with Sudan’s Mycetoma Research Centre, DNDi and its partners evaluated fosravuconazole, an oral antifungal, in the first randomized Phase 2 trial for eumycetoma. Although the drug did not outperform itraconazole, it proved safe and offered practical advantages such as once-weekly dosing, fewer drug interactions, and no requirement to be taken with food.⁸

“We completed a 10-year retrospective review in India and Senegal. We have recorded over 700 mycetoma cases from India, and that helped us identify Rajasthan and Tamil Nadu as areas with some of the highest case numbers. So, we're conducting the next trials of Phase 3b there,” Nyaoke-Anoke said.

The promise of better treatments is what patients living with mycetoma and their caregivers shouldering the strain of the disease look forward to. They hope to avoid years of disability, repeated surgeries, and, in some cases, amputation.

As Amar Ram braces himself to lose his limb to amputation this year, he wishes better diagnostics and medicines had been available when his illness began. He completed his master’s degree and even secured a government teaching job, but he couldn't take it on due to his mycetoma. “It was my dream to become a college professor,” he said. What he wanted, he said, was not much: the chance to lead a normal life.

Reporting for this story was supported by the MSF-DNDi Grant on Neglected Tropical Diseases as part of MSF’s Without Borders Media Fellowship. The fellowship encourages independent, impartial and neutral reporting on health and humanitarian crises.