The social impact of haemophilia

Abstract

Haemophilia, 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.

Hemophilia Home Treatment:Economic Analysis and Implications for Health Policy

“…In addition to acute morbidity and mortality and long-term chronic disability, hemophilia also carries important social and economic consequences for both patients with hemophilia and their families. Because of the lifelong problems and uncertainties associated with the disease, especially before the advent of self-infusion therapy, people with hemophilia have been shown to have disrupted schooling (6), suffer higher rates of unemployment (2;8;16), and marry less frequently (8; 18) than their unaffected peers. Also damaging to the child with hemophilia are its psychological effects, which are more difficult to measure.…”

“…Until the late 1960s, the only treatment available to control episodes of bleeding was infusion of whole blood, or plasma for severe episodes (26), followed by immobilization for a few weeks. This frequently resulted in permanent damage to the joint associated with the hemorrhage (6). With advances in technology, preparations containing concentrates of the missing coagulation factors became available at referral centers.…”