The social impact of haemophilia

Abstract

SummaryHaemophilia, one of the oldest known genetic disorders, imposes varying degrees of disability on those affected. A survey of 137 haemophiliacs, seventy-eight adults and fifty-nine children, in the north of England was conducted to discover the extent of social, educational and employment problems created by the disease, while investigation of sixty-nine mothers of patients provided information on its impact on family life.Some problems are adequately met, others not; those of education and employment are the most serious. Educational deficiencies are due to incomplete and interrupted schooling. Choice of employment is severely restricted for them, and stability of employment is adversely affected by episodes of ill-health. But with improved methods of medical treatment the children are losing less school time than the adults did, fewer of them attend schools for the physically handicapped, and this should result in the attainment of better educational standards, and therefore more hope for permanent and satisfactory employment in the future.The birth of a haemophilic child markedly affects the family, particularly the mother, but again there is a difference in response between the present and the older generation of mothers.