Cadernos de Saúde Pública
On-line version ISSN 1678-4464Print version ISSN 0102-311X
CAIO, Vânia Maria; SILVA, Roberto Benedito de Paiva e; MAGNA, Luís Alberto and RAMALHO, Antonio Sérgio. Community genetics and hemophilia in a Brazilian population. Cad. Saúde Pública [online]. 2001, vol.17, n.3, pp.595-605. ISSN 1678-4464. http://dx.doi.org/10.1590/S0102-311X2001000300014.
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.
Keywords : Hemophilia; Genetics; Behavioral Genetics; Community Genetics.