Living With Hemophilia
People living with hemophilia should consider registering at one of the federally funded hemophilia treatment centers in the United States. There are approximately 140 in the United States, and they provide excellent treatment, education, and support. People with hemophilia should learn all they can about their condition, avoid contact sports, learn to recognize signs of bleeding, and avoid medications that can "thin" the blood.
If you have hemophilia, you can take steps to remain healthy and prevent illness and bleeding problems. If your child has hemophilia, there are many things you can do to help him or her live a healthy life.
There is a network of approximately 140 federally funded hemophilia treatment centers (HTCs), which offer excellent treatment, education, and support services to those living with hemophilia and their families. Many HTCs are located at major university medical and research centers. The teams at these centers often include:
- Nurse coordinators
- Adult and pediatric hematologists (doctors who specialize in blood disorders)
- Social workers, who can help with financial, transportation, mental health, and other issues
- Physical therapists
- Orthopedists (doctors who specialize in disorders of the bones and joints)
If you are living with hemophilia, you should register at one of the HTCs and take advantage of their services. You may wish to go to the HTC for annual checkups even if it means traveling some distance to do so. That way, you or your child may be able to participate in clinical research and benefit from the latest research findings concerning hemophilia treatment.
The HTC team will work with your local healthcare providers to help meet your or your child's needs. Hemophilia research has found that receiving care at HTCs leads to fewer complications and hospitalizations and a better quality of life for those with this condition.