Living 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 hemophilia diagnosis
- As your child grows and becomes more active
- As your child becomes a teenager.
Parents and family of children 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 hemophilia. Ask your doctor, nurse coordinator, or social worker about these groups and camps.
Living With Hemophilia: Ongoing Medical Care Needs
To avoid complications, it is important that those with hemophilia:
- Continue any hemophilia treatment prescribed.
- Get regular checkups and immunizations as recommended. Children with hemophilia normally get the same immunizations as other children but not as an intramuscular injection. Doctors typically recommend that people treated with blood transfusions receive vaccines for hepatitis A and B. There is currently no vaccine for hepatitis C.
- Get regular dental care. Dentists at the HTCs are experts in providing oral care for those with hemophilia. If you see another dentist, tell him or her if you or your child has hemophilia. You or your child can receive medication that reduces bleeding before having dental work.
- Know the signs of bleeding in joints and other parts of the body and know when to call the doctor or go to the emergency room.
(Click Hemophilia Symptoms to learn more about recognizing early symptoms of internal bleeding.)
Contact your doctor or go to the emergency room for:
- Heavy bleeding that cannot be stopped or a wound that continues to bleed.
- Any hemophilia symptoms of bleeding in the brain. Bleeding in the brain is life threatening and requires immediate emergency care.
- Limited motion, pain, or swelling of any joint.
It is a good idea to keep a record of all previous treatments. Be sure to take this information with you to medical appointments and to the hospital or emergency room.
(Click Hemophilia Treatment to learn more about the different treatment options for hemophilia.)
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