Hemophilia (he mo FEE lee ah) is an inherited blood disorder. In hemophilia, a blood clotting factor is missing. In Hemophilia A, Factor VIII (8) is missing. In Hemophilia B, Factor IX (9) is missing.
Without these factors, blood will not clot well. People with hemophilia are born with the disorder. You cannot catch it from someone else. It lasts all of your life and it will not go away. Hemophilia occurs mainly in males but females can carry the gene that causes it and may or may not have bleeding problems. Some children with hemophilia have no family history of the disorder. There is no cure for hemophilia at this time, but there is medicine people can take. This medicine helps them stop bleeding so they can do most of the things everyone else does. By using the medicine and visiting a hemophilia treatment center regularly, the person with hemophilia can expect to live a long and happy life.
Why People with Hemophilia Bleed
Some people think a person with hemophilia can bleed to death from a small cut. This is
not true. Usually small cuts and scrapes stop bleeding just fine.
A person with hemophilia has problems when a fibrin clot is needed to stop the bleeding. People with hemophilia do not have enough of either clotting factor 8 or 9. Because of
this, the fibrin clot is not made or is so thin that the bleeding goes on.
The person with hemophilia does not bleed faster than someone without hemophilia. However, the person with hemophilia will bleed longer.
The key to best outcomes is to prevent and treat bleeding. You do this by making good choices of activities and wearing good safety equipment such as seatbelts, bike helmets and sports safety gear. If your child has bleeding, he may be given Factor VIII (8), IX (9), IV (into a vein). Refer to Helping Hand HH-II-17, IV Therapy. For mucosal bleeding (mouth/nose) he might be given an antifibrinolytic medicine (Amicar/Lysteda). Refer to Helping Hand HH-V-258, Tranexamic Acid (Lysteda).
Your child may need one or more doses of the clotting factor. Your child will receive the factor in the clinic, the hospital or as part of a home treatment program. Where the treatment is done depends on the extent of the bleeding and its location. For some children the nurse coordinator can arrange a home treatment program.
Here are some things you can do to help prevent bleeding:
Remember that a person with a bleeding disorder will not bleed faster than anyone else. However, the bleeding will last longer if not treated.
If your child has any of the following symptoms, he should see a doctor right away. These could be signs of bleeding inside the head:
A child who gives himself factor at home should immediately give himself one dose of factor after a head injury. Then he should see the doctor.
If your child has any of these symptoms of abdominal bleeding, call the doctor:
If your child has any of these complaints, he may have bleeding into a joint and will need clotting factor. Call the doctor right away.
If your child has any of these signs of soft tissue or muscle bleeding, call the doctor:
If your child has bleeding from the lips, gums or tongue, apply pressure and ice packs. If the bleeding does not stop, call the hemophilia team. Do not let him eat or suck a pacifier. Continue to hold ice packs over the cut until your child has been treated or until bleeding has stopped.
Remember: Before your child gets stitches, he MUST be treated with clotting factor.
Contact the Comprehensive Hemophilia Center at (614) 722-3250 Monday through Friday, 8 am to 5 pm.
On weekends and holidays, call the Nationwide Children’s Hospital Operator at (614) 722-2000. Ask for the hematologist on call. The doctor will return your call and tell you what to do. If you are unable to reach the hematologist on call, take your child to the closest emergency room right away.
The longer you wait, the more severe the bleeding can become. Delay can increase the amount of damage and the length of treatment.
If you have any questions, be sure to call the Hemophilia Team.Hemophilia (PDF)
HH-I-170 11/92, Revised 12/15 Copyright 1992-2010 Nationwide Children’s Hospital