Coping and supportBy Mayo Clinic staff
Get a medical alert bracelet for you or your child and be sure it's worn at all times. This bracelet lets medical personnel know that you or your child has hemophilia and the type of clotting factor that's best in case of an emergency.
These tips can help you and your child cope with hemophilia:
- Tap into resources at a designated hemophilia treatment center. Comprehensive hemophilia treatment centers are located throughout the U.S. A wide range of experts at these centers can work with you and your family doctor to create personalized plan for managing your hemophilia. These centers also provide support services, including education for you and your family. Ask your doctor or check the Centers for Disease Control and Prevention (CDC) website for a list of centers.
- Talk with a counselor. If your baby or child has hemophilia, you may be concerned about striking the right balance between keeping your child safe and encouraging as much normal activity as possible. A social worker or therapist with knowledge about hemophilia can help you cope with your concerns and identify the minimum limitations necessary for your child. Ask your doctor to recommend a mental health professional or a support group that can help.
- Let people know. Be sure to tell anyone who will be taking care of your child — baby sitters, workers at your child care center, relatives, friends and teachers — about your child's condition. Because it's also OK to let your child engage in noncontact organized sports, be sure to let coaches know, too.
- Comfort your child. Stay calm and reassure your child during injections and infusions. Encourage and praise your child when the treatment is complete.
- Hoots KW, et al. Clinical manifestations and diagnosis of hemophilia. http://www.uptodate.com/home/index.html. Accessed June 25, 2011.
- Hemophilia. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merckmanuals.com/professional/sec11/ch136/ch136c.html#sec11-ch136-ch136d-524. Accessed June 25, 2011.
- Hemophilia. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/dci/Diseases/hemophilia/hemophilia_all.html. Accessed June 25, 2011.
- Hemophilia facts. U.S. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/hemophilia/facts.html. Accessed June 25, 2011.
- Factor XI deficiency. National Hemophilia Foundation. http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=54&contentid=54. Accessed June 27, 2011.
- Rodriguez NI, et al. Advances in hemophilia: Experimental aspects and therapy. Hematology and Oncology Clinics of North America. 2010; 24:181.
- Care at comprehensive treatment centers can save lives. U.S. Centers for Disease Control and Prevention. http://www.cdc.gov/Features/ComprehensiveCare. Accessed June 25, 2011.