Disability and the social impact of hemophilia.

Abstract

In addition to receiving the medical treatment they need, people with hemophilia or other coagulopathies must acquire the strategies required to deal with the physical, emotional and social challenges they will encounter at the different stages of their lives. To this end, it is necessary to offer support for any uncertainty that may arise for the patient or parents upon diagnosis of the disease, and to help them develop a healthy response pattern to bleeding episodes. First years and decades of life are essential because self-image is built and the foundations for socialization are laid, making it necessary to foster communication and self-esteem. However, in later life, the social impact of the consequences of hemophilia, including disability and dependency, require the introduction of technical and human adaptations and aids. Hematological, rehabilitative, orthopedic psychological and social approaches focus on improving the individual's ability to carry out daily activities independently and facilitate social integration. Patient associations play a key role in minimizing the social impact of hemophilia. Finally, recognition of disability helps to compensate to some extent for the difficulties faced by people with hemophilia.