LIVING WITH HEMOPHILIA

If you have hemophilia, you can take steps to stay healthy and prevent illness and bleeding problems. If your child has hemophilia, you can do many things to help him or her live a healthy life.

Hemophilia Treatment Centers

A network of about 140 federally funded hemophilia treatment centers (HTCs) offers excellent treatment, education and support services to those with hemophilia and their families. Many HTCs are located at major university medical and research centers. The hemophilia teams at these centers include:

· Nurse coordinators

· Adult and pediatric hematologists (doctors who specialize in blood disorders) o

· Social workers (who can help with financial, transportation, mental health, and other issues)

· Physical therapists

· Pediatricians

· Orthopedists (doctors who specialize in disorders of the bones and joints)

· Dentists

Register at one of the HTCs and take advantage of their services. You should at least go to the HTC for annual checkups, even if it means traveling some distance to do so. 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 will work with your local health care providers to help meet your needs or your child's needs. Research has found that receiving care at HTCs leads to fewer complications and hospitalizations, as well as a better quality of life for those with hemophilia.

What To Expect

If your child has severe hemophilia, you and your family will have things to cope with and adjustments to make:

· After diagnosis

· As your child grows and becomes more active

· As your child becomes a teenager

Expect emotional, financial, social and other strains as you adjust to the situation. It is important to learn all you can about the disorder and get the support you need:

· Talk with doctors and other health care providers about treatment, prevention of bleeding, and what to do in emergencies.

· The care teams at the HTCs are excellent resources for education and support as well as treatment. The social worker on the team can help with emotional issues, financial and transportation problems, and other concerns.

· Many resources are available through the Web, and books and other materials are available from national and local hemophilia organizations.