Stigma and Prosthetic Rehabillitation Chalange for Leprosy Survivor in Pandemic Situation

Main Article Content

Melinda Harini
Steven Setiono
Luh Karunia Wahyuni
Sri Linuwih Menaldi
Satyanaya Widyaningrum
Edbert Wreksoatmojo


Indonesia ranks third in terms of countries with the highest number of leprosy in the world. This fact hasn't changed since 20 years ago. This shows the magnitude of leprosy management problems, both at the world level and national level. These problems range from the problem of finding new cases, continuity of the provision of various drug regimens, and control of the spread. In addition to problems related to the detection and handling of new cases, there are also problems in leprosy survivors. Survivors generally have disabilities due to the disease. The disability can continue to be aggravated over time, even though leprosy itself has healed long since. These disabilities vary from numbness, paralysis, shortened and claw-like fingers on the hands and feet, wounds resulting in amputations of the nose, ears, fingers and limbs. Such problems require a complete and continues management. Meanwhile, the management of leprosy, both in patients and survivors, has challenges both in terms of medical, policy, financing, and culture. Not to mention the challenges related to low socialistism, not many Indonesians know the problem of leprosy, especially knowing the magnitude of the problem. Pandemic conditions make things worse. This case report will explain the journey of leprosy survivor who has been amputated and has rehabilitation related to the maintenance and replacement of leg prosthetic in pandemic situation. It will describe the stigma, medical, and socioeconomic challenges that he has to go through. This case report is expected to be an inspiration in improving public, academics, policy makers, and stakeholder awareness, related to leprosy handling problems in Indonesia, both problems for patient and survivors. Thus, it is ultimately expected to reduce the level of disability, promote equal rights for people with disabilities, and support the realization of leprosy elimination nationally and internationally.

Article Details

Case Report
Author Biographies

Melinda Harini, Medical Staff

Faculty of Medicine, Universitas Indonesia, Cipto Mangunkusumo Hospital, Jakarta, Indonesia

Steven Setiono, Medical Staff

Faculty of Medicine, Universitas Indonesia, Cipto Mangunkusumo Hospital, Jakarta, Indonesia

Luh Karunia Wahyuni, Medical Staff

Faculty of Medicine, Universitas Indonesia, Cipto Mangunkusumo Hospital, Jakarta, Indonesia

Sri Linuwih Menaldi, Medical Staff

Faculty of Medicine, Universitas Indonesia, Cipto Mangunkusumo Hospital, Jakarta, Indonesia

Satyanaya Widyaningrum, Medical Staff

Faculty of Medicine, Universitas Indonesia, Cipto Mangunkusumo Hospital, Jakarta, Indonesia

Edbert Wreksoatmojo, Medical Staff

Faculty of Medicine, Universitas Indonesia, Cipto Mangunkusumo Hospital, Jakarta, Indonesia


1. World Health Organization. Leprosy. World Health Organization. 2021. Available at: news-room/fact- sheets/detail/leprosy. Accessed July 10th, 2021. 74| IndoJPMR Vol.11 - 2nd Edition - December 202274
2. Kementerian Kesehatan RI. Profil Kesehatan Indonesia tahun 2018. Jakarta: Kementerian Kesehatan RI; 2019.
3. Cunha C, Pedrosa VL, Dias LC, Braga A, Chrusciak-Talhari A, Santos M, et al. A historical overview of leprosy epidemiology and control activities in amazonas, brazil. Rev Soc Bras Med Trop 2015; 48: 55–62.
4. Zamparoni V. Leprosy: Disease, isolation, and segregation in colonial mozambique. Lepr Dis Isol Segreg Colon Mozambique 2017; 24(1): 13–39.
5. McCormick CD, Lea J, Stryjewska BM, Thompson A, Fairley JK. Trends of leprosy and multibacillary infection in the state of georgia since the early 1900s. PLoS Negl Trop Dis 2019; 13(10): 1–10.
6. Thomson A, Foundation R. Forgotten but not gone : COVID-19 focus poses new risks to ’invisible’ leprosy sufferers 2021;1–21.
7. Mahato S, Bhattarai S, Singh R. Inequities towards leprosy-affected people: A challenge during COVID-19 pandemic. PLoS Negl Trop Dis 2020; 14(7): 1–4.
8. Fundrika BA, Efendi DA. Hari Kusta Sedunia 2021: Ini 8 Provinsi yang Belum Berhasil Eliminasi. 2021. Available at: Accessed September 28th, 2021.
9. Brakel WHV, Sihombing B, Djarir H, Beise K, Kusumawardhani L, Yulihane R, etal. Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination. Glob Health Action 2012; 5: 18394.
10. Dos Santos AR, Silva PRDS, Steinmann P, Ignotti E. Disability progression among
leprosy patients released from treatment: A survival analysis. Infect Dis Poverty 2020; 9(1): 1–7.
11. Moschioni C, Antunes CM de F, Grossi MAF, Lambertucci JR. Risk factors for physical disability at diagnosis of 19,283 new cases of leprosy. Rev Soc Bras MedTrop 2010; 43(1): 19–22.
12. Van’T Noordende AT, Van Brakel WH, Banstola N, Dhakal KP. The impact of leprosy on marital relationships and sexual health among married women in eastern Nepal. J Trop Med 2016; 2016: 4230235.
13. Stangl AL, Earnshaw VA, Logie CH, Van Brakel W, Simbayi LC, Barré I, et al. The Health Stigma and Discrimination Framework: A global, crosscutting framework to inform research, intervention
development, and policy on health-related stigmas. BMC Med 2019; 17(1): 18–23.
14. Somar P, Waltz M, van Brakel W. The impact of leprosy on the mental wellbeing
of leprosy-affected persons and their family members – a systematic review. Glob Ment Heal 2020; 7.
15. Sarkar R, Pradhan S. Leprosy and women. Int J Womens Dermatol 2016; 2(4): 117–21.
16. Ploemacher T, Faber WR, Menke H, Rutten V, Pieters T. Reservoirs and transmission routes of leprosy; A systematic review. PLoS Negl Trop Dis 2020; 14(4): 1.
17. Stephen T, Selvaraj I, Parameswari PJ. Assessment of knowledge, attitude and practice about leprosy among patients and their families in a rural community in tamil
nadu. Indian J Lepr 2014; 86(1): 7–14. 75IndoJPMR Vol.11 - 2 n d Edition-december2022 |75
18. Zewdu A. Knowledge, belief and attitude of the community towards leprosy patients in gindeberet woreda, west shewa zone. Nurs Healthc Int J 2018; 2(4): 1–16.
19. White C, Franco-Paredes C. Leprosy in the 21st century. Clin Microbiol Rev 2015; 28(1): 80–94.
20. Astutik E, Gayatri D. Perceived stigma in people affected by leprosy in leprosy village of sitanala, banten, Indonesia. Kesmas 2018; 12(4): 178–86.
21. Firdaus F. Risiko keterlambatan berobat dan reaksi kusta dengan cacat tingkat 2. J Berk Epidemiol 2019; 7(1): 25–32.
22. Eyanoer PC. Social acceptance and quality of life of leprosy patient. IOP Conf Ser
Earth Environ Sci 2018; 125(1): 0–5.
23. Falk G, Carter J, Nicchitta I, Nyhof E, Romero P. Unemployment rates during the COVID-19 Pandemic: in brief. Congr Res Serv 2021;46554:1–13.
24. Mojtahedi D, Dagnall N, Denovan A, Clough P, Hull S, Canning D, et al. The relationship between mental toughness, job loss, and mental health issues during the COVID-19 pandemic. Front Psychiatry 2021; 11: 607246.
25. Sasakawa Health Foundation. New Grant Program to Support Communities of Persons
Affected by Leprosy During Coronavirus Pandemic Has Long-Term Goal of Strengthening Their Organizational Capacity. Tokyo: Sasakawa Health Foundation; 2020.
26. Ahmad A. Prosthetic problems of transtibial amputee. J Postgrad Med Inst 2009; 23(2): 153–8.
27. Salawu A, Middleton C, Gilbertson A, Kodavali K, Neumann V. Stump ulcers and continued prosthetic limb use. Prosthet Orthot Int 2006; 30(3): 279–85.
28. Nair A, Hanspal RS, Zahedi MS, Saif M, Fisher K. Analyses of prosthetic episodes in lower limb amputees. Prosthet Orthot Int 2008; 32(1): 42–9.
29. Gupta S, Loh KJ, Pedtke A. Sensing and actuation technologies for smart socket prostheses. Biomed Eng Lett 2020; 10(1):103–18.
30. Magnusson L, Ghosh R, Jensen KR, Göbel K, Wågberg J, Wallén S, et al. Quality of life of prosthetic and orthotic users in south india: a cross-sectional study. Health Qual Life Outcomes 2019; 17(1): 50.
31. Esquenazi A, DiGiacomo R. Rehabilitation after amputation. J Am Podiatr Med Assoc 2001; 91(1): 13–22.
32. Levin AZ. Functional outcome following amputation. Top Geriatr Rehabil 2004;20(4): 253–61.
33. Webster JB, Hakimi KN, Williams RM, Aaron P, Norvell DC, Czerniecki JM. Prosthetic fitting, use, and satisfaction
following lower-limb amputation: a prospective study. J Rehabil Res Dev 2012; 49(10): 1493-504.