Living With Hemophilia

What to Expect When Living With Hemophilia

If your child has severe hemophilia, you and your family will have things to cope with and adjustments to make:
  • After the hemophilia diagnosis
  • As your child grows and becomes more active
  • As your child becomes a teenager.
Parents and family of children living with hemophilia should expect emotional, financial, social, and other strains. It is important to learn all you can about the disorder and to get the support you need:
  • Talk with doctors and other healthcare providers about treatment, preventing bleeding, and what to do in case of an emergency.
  • Take advantage of the help that the care teams at the HTCs can provide. They are excellent resources for education and support as well as treatment. For example, the social worker on the team can help with emotional issues, financial and transportation problems, and other concerns.
  • Search for resources available through the Web, and look for books and other materials that may be available from national and local hemophilia organizations.
  • Look into support groups, which offer a variety of activities for children with hemophilia and family members. Some groups offer summer camps for children with this condition. Ask your doctor, nurse coordinator, or social worker about these groups and camps.

Hemophilia Disease

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