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Understanding the Stigma of Leprosy Edward Eremugo Luka MBBS, Msciha Introduction Leprosy Is the Oldest Disease Known to Man

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Understanding the Stigma of Leprosy Edward Eremugo Luka MBBS, Msciha Introduction Leprosy Is the Oldest Disease Known to Man Southern Sudan Medical Journal vol 3. no 3. Understanding the stigma of leprosy Edward Eremugo Luka MBBS, MscIHa Introduction Leprosy is the oldest disease known to man. The earliest written records describing true leprosy came from India around the period 600 BC1. Leprosy is caused by Mycobacterium leprae; the Norwegian, Dr Amauer Hansen, isolated the bacterium in 1873. Leprosy is also called Hansen’s disease after him. Although it is the first human pathogenic bacterium to be defined, M. leprae is the only bacterium causing disease in man that has not been cultured in the laboratory2. Leprosy situation Leprosy is found Some studies have concluded throughout the Sudan with that stigma affects many aspects areas of concentration in of the lives of people affected by the South, West and East. leprosy including “mobility, Sudan has achieved the interpersonal relationships, elimination level of leprosy, marriage, employment, leisure defined as a prevalence of activities, and attendance at less than 1/10,000 social and religious functions” 5. population. At the end of Stigma process 2008, the registered Understanding how stigma prevalence was 1,892 cases. develops is crucial for planning The number of newly Figure 1. Lepromatous leprosy patient presenting strategies to reduce it Stigma detected cases was 1,901, at leprosy clinic. Photo: Edward Luka associated with leprosy does not including data from start immediately after the Southern Sudan3. disease starts, but develops over Stigma of leprosy time in 2 stages: The fear of leprosy leads to the stigma and discrimination and is due . Stage 1 - the cognitive to lack of understanding and knowledge about leprosy - which dimension. This describes increases misconceptions about the disease’s transmission and how much influence the treatment. The fact that most of those with untreated leprosy end up disease has on the person’s with severe deformities and disfigurements has contributed to the life. The patients pass stigma4 – see Figures 1 and 2. through the concealability course, disruptive, aesthetic, origin and peril dimensions8. Definition of stigma . Stage 2 - the affective stage The commonly used definition of stigma is “the attribute that is deeply in which the social discrediting” and “that reduces the bearer from a whole and usual devaluation of the individual 6 person to a tainted, discounted one” . occurs. Heijnders describes a similar Another definition states that stigma is “a social process that exists process of stigmatisation. In her when elements of labelling, stereotyping, separation, status loss and studies in Nepal, she noted that 7 discrimination occur in a power situation that allows them” . people with leprosy go through Stigma can be classified into three types: two stages in coping with their . Enacted - the commonest type in which there are actual condition: the concealment experiences of discrimination. phase and the exposure phase. Perceived - stigma viewed from the perspective of the patient. It In moving from one phase to is “the devaluation, shame, secrecy and withdrawal triggered by the other, there are triggers to applying negative stereotypes to oneself”. exposure and discrimination . Self stigma - the fear of being discriminated against5. such as the visible signs of the disease. However, she found that in the process, stigma a PHC Advisor in the Sudan Health Transformation Programme Phase Two([email protected]) – see more details on p48. 45 Southern Sudan Medical Journal vol 3. no 3. enforces the inequalities that are found in the community with regards Fighting the stigma of to gender, age and social class9. leprosy Fear and stigma are difficult to The impact of stigma remove. They can only be dealt Having a stigmatising disease like leprosy severely affects aspects of with through a combination of life such as social status, employment opportunities or jobs, marriage strategies. Heijnders and van der 7 and family life . These can be summarised as effects on: Meij10 described 11 levels of . the individual interventions and strategies that . the community can be use to fight stigma. These . public health programmes and interventions10, 11. focused on: Effects on the individual . changing the image of the As noted by Weis and Ramakrishna “the impact of the meaning of the diseases disease may be a greater source of suffering than symptoms of the . integrating programmes disease” 12. Individuals with leprosy have emotional stress and anxiety, . rehabilitating patients and which may lead to psychological and psychiatric morbidity13, 14, as well . media campaigns. as a decreased quality of life on the WHO Quality of Life Assessment These interventions are now BREFb 14. They become isolated and lack motivation to continue used in most leprosy control treatment (if already started). There is a risk that the disease will programmes. progress with resultant disability and complications. Individuals may have decreased status in the community because of their conditions7. WHO encourages integrating In the case of leprosy they may become destitute and resort to begging leprosy into the general health as the only way of survival4, 15. service. Leprosy patients should Studies have shown that these effects are greater in female than male be treated in the same outpatient patients16. A review of leprosy patients in South East Nigeria from department as those with any 1988 to 1997 found that the effects were greater in women than men. other disease, showing the The women also tend to present late, have complications and patients and their communities disabilities17, 18. that leprosy is not a 'different' disease. Different countries are Effects on community interaction in different stages of The social participation of persons affected by leprosy is much more implementing these distressing to them than their individual effects. It impairs their quality 10, 12, 18, 19, 20 interventions that have been of life in various ways . Persons with stigmatising conditions 19 experience problems in their marriages or difficulties in getting shown to reduce stigma . married and in their employment or getting employed. Their Education and media campaigns community interaction is affected, such as social relationships and friendships. Their families may experience reduced educational help to correct false beliefs and opportunities, leading to further inequities between those affected and raise awareness of new advances. They include information about those who are not. All of these negative effects result from poor leprosy and its treatment, community knowledge of the disease, and the misconceptions held about them. context-specific media messages addressing misconceptions and Effects on public health programmes traditional beliefs about leprosy, The impact of stigma on public health programmes and interventions positive images of leprosy and have been well documented and discussed10, 12. People with the testimonies of people stigmatising conditions may conceal or deny their condition and delay successfully cured of leprosy22. seeking treatment – which may: Physical and socio-economic . result in the diseases getting worse and increase the risk of rehabilitation helps to restore complications self-esteem and status in the . increase the transmission of the disease in the community community, and assists patients . make it difficult to trace contacts and those defaulted from to find employment. Most treatment - important in leprosy and TB21. studies have shown that the Some patients may not adhere to treatment when diagnosed especially stigma of leprosy is aggravated for treatment that takes a long time, like TB and leprosy12. Risk of by the physical deformities drug resistance developing is then very high. In general therefore associated with the disease19, 23, stigma results in an increased burden on the general health services. 24. So programmes that prevent disabilities developing or identify patients most at risk of b BREF = Best Available Technique Reference document developing them, can reduce the effects of stigma20, 25. 46 Southern Sudan Medical Journal vol 3. no 3. Psychological or physical changes reported by the patients can predict 8. Bainson, K. and van den development of participation restriction (i.e. the reduction of their Borne, B. ‘Dimensions and involvement in life situations such as social, economic, civic, process of stigmatization in interpersonal, domestic and educational domains of daily living). leprosy’, Leprosy Review, 1998; A study in Nepal showed that people affected by leprosy who were in 69: 341-350. 9. Heijnders, M. ‘The dynamics of the Stigma Elimination stigma in leprosy’, International 26 Programme (STEP) Journal of Leprosy and Other were less stigmatised and Mycobacterial Diseases, 2004; 72: participated more in the 437-447. community than those 10. Heijnders, M. and van Der who were not. The Meij, S. ‘The fight against assessment of the stigma stigma: an overview of the in this study used the stigma reduction strategies and Participation Scale interventions’, Psychology, Health developed by van and Medicine, 2006; 11: 353-363. 11 11. van Brakel W. ‘Measuring Brakel . STEP health related stigma’, Figure 2.Persons affected by leprosy with disabilities participants were more in Mayo, Khartoum. Photo: Edward Luka Psychology, Health and Medicine, empowered and become 2006; 11: 307-334. change agents in their 12. Weis, M. and Ramakhrishna, J. own communities. This kind of intervention has been proven to be Stigma interventions and research for
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