title: Social implications of leprosy in the Netherlands--stigma among ex-leprosy patients in a non-endemic setting.
abstract: BACKGROUND
  In the Netherlands, leprosy is a rare and non-endemic disease, still occurring as an 'import disease'. Moreover a considerable group of people affected by leprosy, originating mainly from the former Dutch colonies, suffer from neuropathic complications. This study investigates the social implications of leprosy for those affected in the Netherlands.
  
  
  METHODS
  Thirty-one people affected were interviewed as well as six medical leprosy experts. The social implications were measured by means of semi-structured interviews and the Participation Scale.
  
  
  RESULTS
  Self-stigma, shame and secrecy were often reported. Discrimination and stigmatisation of ex-leprosy patients by people around them seems a less frequent problem. Yet, people affected by leprosy seem to be a forgotten group with a high social burden due to low self-esteem and reduced social participation. Medical experts do not seem to be aware of the severity of leprosy-related forms of stigma in their patients. Ex-leprosy patients lack sound disease-related information and support groups. Due to the low incidence and as a consequence, the lack of awareness among doctors, leprosy patients in the Netherlands are faced with substantial diagnostic delay (mean delay 1-8 years).
  
  
  CONCLUSIONS
  Leprosy and its stigma affect the social lives of patients, even in a non-endemic area such as the Netherlands. Almost all respondents were affected by self-stigma. There is a need for 1) more information and support groups for patients, and 2) increased awareness among professionals.
authors: Netherlands Leprosy Relief (NLR), Amsterdam, the Netherlands.
authors: Roos
authors: R
authors: De Groot
authors: Wim H
authors: WH
authors: Van Brakel
authors: Henry J C
authors: HJ
authors: De Vries
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D057210:Delayed Diagnosis; D005260:Female; D006801:Humans; D015994:Incidence; D007407:Interviews as Topic; D007918:Leprosy / Q000208:ethnology* / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D009426:Netherlands / Q000453:epidemiology; D011287:Prejudice; D036301:Qualitative Research; D012649:Self Concept; D012934:Social Isolation; D012944:Social Support; D013240:Stereotyping