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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 BleedSome 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. TreatmentThe 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 seat belts, 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. Ways to Help Prevent BleedingHere are some things you can do to help prevent bleeding:
Types of Bleeding and TreatmentRemember that a person with a bleeding disorder will not bleed faster than anyone else. However, the bleeding will last longer if not treated.
Head or Neck BleedingIf 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. Abdominal BleedingIf your child has any of these symptoms of abdominal bleeding, call the doctor:
Joint BleedingIf your child has any of these complaints, he may have bleeding into a joint and will need clotting factor. Call the doctor right away.
Soft Tissue or Muscle BleedingIf your child has any of these signs of soft tissue or muscle bleeding, call the doctor:
Mouth BleedingIf 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. Cuts and Scrapes
Remember: Before your child gets stitches, he MUST be treated with clotting factor. Daily Care
Giving Clotting Factor at Home
The Comprehensive Hemophilia Center
Phone Numbers for EmergenciesContact the Comprehensive Hemophilia Center at (614) 722-3250 Monday through Friday, 8 a.m. to 5 p.m. 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 A. Neutropenic*B.Bleeding precautionsC. ContactD. Droplet
Hemophilia is an inherited bleeding disorder. Children with hemophilia can’t stop bleeding because they don’t have enough clotting factor in their blood. Clotting factors are needed for blood to clot. Blood clots to prevent excessive bleeding. There are many blood clotting factors involved in the forming of clots to stop bleeding. Two common factors that affect blood clotting are factor VIII and factor IX. How severe your child’s hemophilia is depends on the level of blood clotting factors in his or her blood. The 3 main forms of hemophilia include:
Dr. Elias Zambidis cares for children suffering from leukemia and other blood disorders. His laboratory studies human pluripotent stem cells, which may one day be used to treat not only blood disorders, but also heart disease, vascular disease, cancer and autoimmune diseases.
Hemophilia types A and B are inherited diseases. They are passed on from parents to children through a gene on the X chromosome. Females have two X chromosomes, while males have one X and one Y chromosome.
In about one-third of the children with hemophilia, there is no family history of the disorder. In these cases, it’s believed that the disorder could be related to a new gene flaw. Carriers of the hemophilia gene often have normal levels of clotting factors but may:
Hemophilia C usually doesn’t cause problems, but people may have increased bleeding after surgery. What are the symptoms of hemophilia?The most common symptom of this disorder is heavy, uncontrollable bleeding. The severity of hemophilia depends on the amount of clotting factors in the blood. Those affected with hemophilia that have levels greater than 5% (100% being average for unaffected children) most often have bleeding only with major surgeries or tooth extractions. These children may not even be diagnosed until bleeding complications from a surgery occur. Severe hemophilia is when the factor VIII or IX is less than 1%. Bleeding can occur in these children, even with the minimal activities of daily life. Bleeding may also occur from no known injury. Bleeding most often occurs in the joints and in the head. Your child's symptoms may also include:
The symptoms of hemophilia may look like other problems. Always check with your child's doctor for a diagnosis. How is hemophilia in children diagnosed?he diagnosis of hemophilia is based on your family history, your child's medical history, and a physical exam. Blood tests include:
How is hemophilia treated?Your child's healthcare provider will refer you to a hematologist, an expert in blood disorders. Your child’s health care provider will figure out the best treatment based on:
Treatment depends on the type and severity of the hemophilia. Treatment for hemophilia is aimed at preventing bleeding complications (mainly head and joint bleeds). Treatment may include:
What are the complications of hemophilia?Complications of hemophilia include:
How is hemophilia managed?With careful management, many children with hemophilia can live relatively healthy lives with a normal lifespan. Managing your child's hemophilia may include:
When should I call my child's healthcare provider?When you should call will vary based on how severe your child's condition is and what treatment he or she is getting. Since hemophilia is a long-term condition, talk with your child's healthcare provider about when you should call or get medical treatment for your child. Call your child's healthcare provider if your child:
Key points about hemophilia in children
Next stepsTips to help you get the most from a visit to your child’s health care provider:
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