Living with Hemophilia
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If you or your child has hemophilia, you can take steps to prevent bleeding problems. Thanks to improvements in treatment, a child with hemophilia today is likely to live a normal lifespan.
Hemophilia Treatment Centers
A nationwide network of hemophilia treatment centers (HTCs), funded by the federal government, is an important resource for families and people affected by hemophilia. The medical experts in HTCs provide treatment, education, and support. They can teach you or your family member how to do home treatments. Center staff also can provide information to your doctor.
People who receive care in HTCs are less likely than those who receive care elsewhere to have bleeding complications and hospitalizations, and they’re more likely to have a better quality of life. This may be due to the centers’ emphasis on prevention of bleeding and the education and support provided to patients and their caregivers.
More than 130 federally funded HTCs are located throughout the United States. Many HTCs are located at major university medical and research centers. The hemophilia teams at these centers include:
- Nurse coordinators
- Pediatricians and adult and pediatric hematologists (doctors who specialize in blood disorders)
- Social workers (who can help with financial issues, transportation, mental health, and other issues)
- Physical therapists and orthopedists (doctors who specialize in disorders of the bones and joints)
- Dentists
To find an HTC located near you, visit the directory of HTCs on the Centers for Disease Control and Prevention website. Many people with hemophilia go to an HTC for annual checkups, even if it means traveling some distance to do so.
At an HTC, you or your child may be able to participate in clinical research and benefit from the latest research findings about hemophilia treatment. The HTC team also will work with your local health care providers to help meet your needs or your child’s needs.
