title: [Community genetics and hemophilia in a Brazilian population].
abstract: Hemophilia is an important hemorrhagic disease in Brazil, affecting about 1 out of every 10,000 males. Patient's self-perception of hemophilia and interaction with the community are relevant to the clinical management of this disease. We investigated several social, psychological, and community aspects of hemophilia in a Brazilian population (Campinas, São Paulo State), interviewing 30 hemophiliac males, a control sample comprised of 73 non-hemophiliac brothers, and 641 individuals from the community. According to our results, more severe social disability in the hemophiliac patient was related to economic factors, mainly unemployment; however, no difference was found in relation to marital status, reproduction, or education. Self-perception of changes in health and lifestyle by individuals with hemophilia showed frequent self-stigmatization, along with depression, anxiety, and insecurity. The community showed a widespread lack of familiarity with hemophilia (49%), viewing people with hemophilia with the kinds of prejudices often observed in relation to people with infectious diseases, like AIDS. The paper concludes by recommending that a community-based program be implemented to improve the social adjustment status of individuals with hemophilia.
authors.affiliation: Departamento de Metodologia e Ação, Faculdade de Serviço Social, Pontifícia Universidade Católica de Campinas, Campinas, SP, 13020-904, Brasil.
authors.forename: V M
authors.initials: VM
authors.lastname: Caio
authors.forename: R B
authors.initials: RB
authors.lastname: de Paiva e Silva
authors.forename: L A
authors.initials: LA
authors.lastname: Magna
authors.forename: A S
authors.initials: AS
authors.lastname: Ramalho
mesh_terms: D000328:Adult; D000368:Aged; D001938:Brazil; D003154:Community Medicine; D005260:Female; D005824:Genetics, Behavioral; D005826:Genetics, Medical; D007722:Health Knowledge, Attitudes, Practice; D006467:Hemophilia A / Q000235:genetics* / Q000523:psychology; D002836:Hemophilia B / Q000235:genetics* / Q000523:psychology; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D012649:Self Concept