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Coping and support
By Mayo Clinic staffGet 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 guidelines for managing hemophilia and reducing your risk of complications. 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) Web site 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 fears 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 inform anyone who will be taking care of your child — a baby sitter, 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.
- Ferri FF. Hemophilia. In: Ferri FF. Ferri's Clinical Advisor 2009. St. Louis, Mo.: Mosby; 2008. http://www.mdconsult.com/das/book/body/127220953-8/819378765/1701/258.html#4-u1.0-B978-0-323-04134-8..50011-2--subchapter13_5514. Accessed March 21, 2009.
- Hoots KW, et al. Clinical manifestations and diagnosis of hemophilia. http://www.uptodate.com/home/index.html. Accessed March 21, 2009.
- Hemophilia. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/dci/Diseases/hemophilia/hemophilia_what.html. Accessed March 21, 2009.
- Hemophilia. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merck.com/mmpe/sec11/ch136/ch136d.html. Accessed March 21, 2009.
- Hoots KW, et al. Treatment of hemophilia. http://www.uptodate.com/home/index.html. Accessed March 21, 2009.
- Kessler CM. Hemorrhagic disorders: Coagulation factor deficiencies. In: Goldman L, et al., eds. Cecil Medicine. 23rd ed. Philadelphia, Pa.: Saunders Elsevier; 2007:697.
- Pruthi RK (expert opinion). Mayo Clinic, Rochester, Minn. April 9, 2009.
