“THE COAST” – a fictional novel by Eleanor Limprecht – is set in the early 1900s and details the horrendous treatment of Leprosy patients at the time. Patients suffering with leprosy, also known as Hansen’s disease, have endured prejudice and social stigma due to the physical disfigurement and impairment it caused. Before the transmission of Hansen’s disease was clearly understood, treatment often included complete isolation and containment of Hansen’s disease sufferers in leprosy colonies, often in remote locations. Thankfully, following extensive research and the development of the current multi drug therapy that we are fortunate to access today, Hansen’s disease is now a completely curable disease (Santacroce et al. 2021).
Hansen’s disease is caused by a bacillus – Mycobacterium Leprae. It is an intracellular, aerobic, acid-fast, rod-shaped bacillus surrounded by a waxy coating. This waxy coating is one of the most important virulence factors of the bacillus. The microorganism was identified by the Norwegian Physician, Dr Gerhard Armauer Hansen in 1874. At the time he was searching for unknown bacteria in the skin nodules of those suffering with the disease, so the illness was called Hansen’s disease. The disease affects skin and nerves with severe destructive affects. The physical impairments caused by the illness and the devastating effects on the skin and nerves brought prejudice, fear and segregation in all societies since ancient times – patients were socially isolated and forced to live in poverty and loneliness.
Hansen’s Disease is a very ancient disease however it is not possible to establish exactly where and when it emerged and spread throughout the continents. Evidence of the disease goes back as far as 2000BC in India (Santacroce et al. 2021).
World map representing results of Mycobacterium Leprae’s DNA quantification in paleontological finds on the continents in relation to years (Santacroce et al. 2021).
Around 1200 AD ‘Lepors’ were treated inhumanly, discarded from society and strategically excluded in quarantined colonies far enough from the cities to avoid contagion. They could not go back into society or back to their families as it was feared that they were still contagious. During the middle ages “lepor Masses” were held after a Hansen’s disease diagnosis to declare that the afflicted one was officially dead for the rest of society. Lepers were instructed to wear bells or clappers and had to ring them constantly if they were outside. After the middle ages the disease started to decline and the immunisation program against Tuberculosis also provided some cross immunity against Hansen’s disease (NSW Health, 2012).
Clinical features of leprosy include lumps on both sides of the body, bleeding and inflammation of the eyes, discoloured patches of skin (light or red coloured), reduction in sensation of touch, pins and needles in peripheries, disfiguring sores and enlarged peripheral nerves (Bhandari et al, 2023). Late-stage leprosy can cause vision loss, disfigurement of the nose, permanent damage to the hands and feet, shortening of fingers and toes and paralysis (Santacroce et al. 2021). Early diagnosis and treatment can usually prevent disability but ensuring treatment compliance is important for positive outcomes.
The disease is transmitted through droplets from the nose and mouth. Prolonged, close contact over months with someone with untreated leprosy is needed to catch the disease, which challenged traditional thinking which assumed Hansen’s disease to be highly contagious (WHO, 2023). The disease is not spread through casual contact with a person who has leprosy like shaking hands or hugging, sharing meals or sitting next to each other. Moreover, the patient stops transmitting the disease when they begin treatment (WHO, 2023).
Hansen’s disease is diagnosed by skin or nasal smears. This is in conjunction with clinical presentation of skin lesions, peripheral neuropathy and anaesthetic skin patches (definitive loss of sensation in a pale or reddish skin patch) (Santacroce et al. 2021). It is currently considered a ‘notifiable condition’ to the relevant Public Health Unit by the patient’s treating team. If hospitalization is required, please consult your relevant public health or infectious diseases unit to obtain guidelines for isolation. NSW health suggests isolation for patients that are not yet undergoing treatment with contact precautions for the first 72 hours of the patient’s treatment regime (NSW Health, 2013). Clinicians should provide education to the affected patient and family to reduce stigma and prejudice regarding the low risk of transmission once treatment has commenced.
Treatment of Hansen’s disease has undergone important changes over the years:
- Chaulmoogra oil in 1915
- Sulfone therapy in 1940
- Dapsone treatment lasted many years with first resistance occurring in 1960s
- Rifampicin and clofazimine were added to Dapsone to create multi drug therapy (MDT). This triple combination of drugs is the official treatment of Hansen’s disease recommended by WHO from 1981 and has been provided free of costs since 1995. It lasts for 6 months for pauci-bacillary and 12 months for multi-bacillary cases
(Santacroce et al. 2021)
Since the introduction of multi drug therapy the prevalence of Hansen’s disease has decreased from over 5 million cases in the 1980’s to 133,802 cases in 2021 (WHO, 2023). Efforts for Hansen’s disease control reached the important goal of eliminating it as a public health problem globally in 2000 (registered prevalence of less than 1 case per 10,000 population in 2000) (WHO, 2023).
References
Bhandari, J, Awais, M. Robbins, B. & Gupta, V. (2023). Leprosy. National Library of Medicine. https://www.ncbi.nlm.nih.gov/books/NBK559307/
NSW Health (2013). Control guidelines - leprosy control guideline. https://www.health.nsw.gov.au/Infectious/controlguideline/Pages/leprosy.aspx
Santacroce, L., Del Prete, R., Charitos, I. A., & Bottalico, L. (2021). Mycobacterium leprae: A historical study on the origins of leprosy and its social stigma. Le infezioni in medicina, 29(4), 623–632. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8805473/
World Health organization. (2023). Leprosy. https://www.who.int/news-room/fact-sheets/detail/leprosy
