What You Need to Know

Family members can be team-members in hemophilia care, especially since hemophilia is a lifelong condition. Parents, spouses, and other family members can learn about hemophilia and become active supporters.

If you are providing care to someone with hemophilia in your family, here are some guidelines to support you in your care of that family member.

The World Federation of Hemophilia offers the following guidelines for family members:

• Family members, including the person(s) with hemophilia, must recognize and acknowledge the presence of hemophilia within the family.
• Every member of the family must be provided with at least basic information on the physical and psychological aspects of hemophilia.
• Be available to provide emotional, physical, and spiritual support, if needed, to the member with hemophilia.
• Learn to recognize emotional or attitudinal changes of the person with hemophilia as this may indicate stress that may be related to bleeding occurrences, physical pain, or emotional difficulty that may need immediate intervention.
• Try to be calm for your family member when bleeding, pain, and other hemophilia signs and symptoms occur: this will help demonstrate that this condition can be calmly managed at home or anywhere.
• Learn to recognize and be available and support if the need for medical attention or hospitalization is necessary.
• Encourage the child/person with hemophilia in your family to socialize with other members of the family and within the community.
• Support indoor as well as outdoor activities (with lesser risks of injury or harm to the person with hemophilia): safe play and participation in sporting activities should be encouraged!
• A young, active child with hemophilia commonly has numerous bruises. Parents should prepare themselves and know how to handle the situation should they be wrongfully accused of child abuse.