Leprosy still exists: the power of awareness and early detection

In a quiet corner of Uzbekistan, a neurologist observed something unusual during a routine outreach visit. A man had sparse eyebrows, dry skin and patches with no sensation – signs of leprosy that many might have overlooked. But Dr Bahodir Karimov remembered the WHO training on leprosy he attended in 2023, so he picked up the phone to call it in.

“I was not sure, but I knew I had to act quickly and not make a mistake,” says Dr Karimov, who works in Khojeli district, Karakalpakstan. His prompt call led to a swift diagnosis. Thanks to this early detection, the patient was quickly referred to the Republican Leprosarium for treatment.

From left to right: Eshboev Egamberdi (Professor, Chief Leprologist of the Republic of Uzbekistan), Nuratdinova Zamira (Chief Physician of the Karakalpak Leprosarium), Jamshid Gadoev (National Professional WHO Country Office in Uzbekistan).

Capturing every case

Often thought to be a disease of the past, leprosy, also known as Hansen’s disease, still exists today. It is a chronic infectious disease caused mainly by a type of bacteria called Mycobacterium leprae. The disease affects the skin, the peripheral nerves and the mucosa of the upper respiratory tract as well as the eyes. Apart from physical deformity, people affected by leprosy also face stigmatization and discrimination.

Approximately 200 000 new cases are reported around the world each year. In Uzbekistan, 3 cases were officially reported in 2024. Ongoing efforts in the country aim to improve case detection to ensure that every case is captured.

Leprosy is treatable and curable but only if caught in time. Yet, the biggest barrier to eliminating this disease is a lack of awareness, even among health-care workers.

Dr Jumagul Abdurasuliyeva, a rural doctor in Uzbekistan’s Amudarya district, is no stranger to confronting this neglected disease. She once diagnosed a patient with leprosy and now, decades later, recognized signs in his nephew. “I did not say anything immediately,” she recalled. “It is hard to tell someone they may have leprosy. But I knew what to do. I called specialists right away.”

Health workers in Karakalpakstan and Khorezm have been trained through WHO-supported efforts to identify early signs of leprosy, such as dry skin patches, numbness or unexplained wounds, particularly in remote communities. Their willingness to take swift action is no coincidence.

A national leprosy plan

The WHO Country Office in Uzbekistan, in collaboration with the Ministry of Health of the Republic of Uzbekistan, adopted the National Leprosy Strategic Plan 2022–2030, aligned with the Global leprosy (Hansen’s disease) strategy 2021–2030: towards zero leprosy.

As part of implementing the strategy, WHO conducted a series of capacity building trainings for 81 health-care workers working in leprosy-endemic areas of Uzbekistan. The training sessions included ophthalmologists, neurologists, epidemiologists and general practitioners. The sessions aimed to strengthen early case detection and improve the management of leprosy and its complications.

As a next step, the WHO Country Office in Uzbekistan and the Ministry of Health plan to initiate contact tracing activities in the targeted regions. The objective is to identify new leprosy cases, particularly among household and close contacts of known patients, and to provide post-exposure prophylaxis in line with WHO recommendations, to interrupt transmission and prevent the development of the disease.

Deep impact

Nikolay, a resident of a village in Khojeli in Karakalpakstan, did not know he had leprosy. “I thought I was healthy. I never imagined it,” he says. “When the doctors told me, I panicked. But they explained it was curable. That gave me hope”.

Others reacted more calmly to the shocking news. “I just trusted the doctors,” says Alikhan, another patient from Karakalpakstan. “They knew what to do.”

Leprosy often affects more than the skin – it can also deeply impact mental well-being. Studies show that over 30% of people affected by leprosy experience depression, anxiety, low self-esteem or even suicidal thoughts. Many describe a sense of hopelessness or emotional numbness, commonly resulting from years of stigma, social isolation and fear of discrimination.

For Mekhriniso, a grandmother from Khorezm, the turning point came after months of incorrect treatment. “I had skin patches, but no one knew what it was,” she recalls. “Finally, I was referred to a facility in Nukus and received the right diagnosis.” Now Mekhriniso is undergoing treatment and dreams of returning to her family and grandchildren.

Why early detection is so important

Leprosy is believed to be transmitted through droplets from the nose and mouth of a person with untreated disease. The disease does not spread through casual contact like shaking hands or hugging, sharing meals or sitting next to someone. It results from prolonged, close contact and the patient stops transmitting the disease upon initiation of treatment.

Leprosy is not highly contagious. It is not a curse and it is curable, but early detection is everything. The current recommended treatment regimen consists of 3 medicines – dapsone, rifampicin and clofazimine – and is referred to as multidrug therapy (MDT). The same regimen, with a duration of 6 months for paucibacillary and 12 months for multibacillary cases, has been recommended by WHO. MDT kills the pathogen and cures the patient. Early diagnosis and prompt treatment can help to prevent disability. WHO has been providing MDT free of charge. 

“We need to keep our eyes open – not just for leprosy, but for any infectious disease,” says Dr Karimov. “We learned that from COVID-19.”

“Let’s not forget that leprosy exists,” adds Dr Abdurasuliyeva. “And let’s never forget that behind every case is a life that can be changed.”