We assessed diagnosis and consequences of leprosy reactions as perceived by affected individuals. A cross-sectional study was performed in five municipalities in an endemic disease cluster in Brazil. Structured interviews included 280 leprosy-affected individuals who had experienced reactions after release from treatment (RFT), 2007-2009. Open questions included information on diagnostic features of leprosy reactions, sensory loss and self-perceived changes in life after experiencing leprosy reactions. In this study, 43.2% were diagnosed with reaction during multi-drug therapy. In the majority of cases, the patient himself/herself perceived disease symptoms first (n=240; 85.8%). Primary Health Care Centres were the first entry point into the health system for 95/150 (63.3%). In 72.6% of these, leprosy diagnosis was made within the primary care setting. Patientperceived signs and symptoms of reactions included skin lesions (42%) and neurological symptoms (39%). In total, 216/280 (77.1%) stated that they had perceived changes in life. Physical impairments limiting possibilities to work and reduced income were mentioned commonly (n=118; 54.6%). Discrimination and social isolation were also experienced. Our study indicates an inadequate response of health services for individuals with reactions after RFT. An integrated approach is needed, including physical, psychological care and self-care groups.
leprosy; biological reactions; health of the disabled