F like Family : ” group of people that are linked together by blood and or/ by feelings of belonging and interdependence”
What is the importance of FAMILY in Hemophilia? well I believe, a family with one or more sons with hemophilia has to know that interdependence and freedom are 2 important issues to reach. These are kind of opposites: we depend on each other and we want our space, our individuality to be respected.
More on this subject is in my monograph Psychosocial Care for People with Hemophilia toh-44_psychosocial-care
Here are Some ideas I have noticed that a functional and creative family :
1) Seeks always for SOLUTIONS for the problems that appear.
2) Has several good friends with other kids (it helps) to share time and different programs together
3) All the members know how to explain What is hemophilia, what to do, and whom to call in emergency case
4) Knows that a child with hemophilia will have some restrictions in some areas that another son or daughter won’t have. So hemophilia musn’t always SPREAD all over other siblings and parents. Each one of the members can have his TIME and SPACE to do his activities.
5) The family knows that conflicts and different feelings will naturally arouse because of the differences and will allow them to be expressed without blaming anyone for feeling them. Exemple: a sibling might feel jealous of the atention that his brother with hemophilia receives, and at the same time he might feel guilty to not have a health issue to care about.
The boy with hemophilia can feel bad and with low self esteem because he can’t participate in body contact sports like his brother or sister does…or he can feel he is not handsome because he has a joint that is swollen. Envy will arise and must be understood as a first step to reach a dream or find another one more suitable to his real possibilities. There aren’t good or bad feelings…there are ACTIONS and consequences…