Hemophilia
Treatment Overview
Treatment of hemophilia is determined by how severe the disease is. Because hemophilia is a genetic disease, treatment often begins at birth. Hemophilia is primarily treated by replacing the absent or abnormal clotting factors to prevent severe blood loss and complications from bleeding.
Viruses can be transmitted through donated blood products, although this happens very rarely. Since 1985, blood products, including clotting factor concentrates, have been screened for viral diseases, such as the human immunodeficiency virus (HIV), hepatitis B, and hepatitis C. Blood that is suspected of being contaminated with these viruses is not used. Current blood-purifying procedures destroy most viruses that are not detected during screening. Some virus risk still exists because of hepatitis A and parvovirus (the virus that causes fifth disease), which are difficult to detect and destroy because of their molecular structure. As a result, in very rare cases some viruses are transmitted through the clotting factor plasma products from donated blood, which can result in complications. Plasma concentrates produced in a lab (using recombinant DNA technology) have almost no risk of transmitting viruses.4
Initial treatment
If you are pregnant and know that hemophilia runs in your family, talk to your health professional about hemophilia care. A diagnosis can be made at the time of birth. Sometimes mothers do not know that they are carriers for hemophilia, and in that case you may not discover that your son has hemophilia until he has noticeable bruising or bleeding following an injury. Tests will determine which form of hemophilia is present and how severe it is.
Children and adults with mild hemophilia may not need clotting factor replacement, except before medical or dental procedures or following an injury. For more severe hemophilia, clotting factor replacement can be given intravenously. A child as young as 10 can learn to self-administer the replacement.
Hemophilia treatment centres are available at most large medical centres and are an excellent resource to help you and your family get the best care for this condition. These centres have hematologists, nurses, social workers, physiotherapists, and dentists who specialize in treating people with hemophilia.
Ongoing treatment
Clotting factors are replaced by injecting (infusing) clotting factor replacement into the veins. The severity of hemophilia determines how clotting factors are replaced.
- Severe forms of hemophilia: Clotting factors may be replaced on a regularly scheduled basis (prophylaxis) to prevent bleeding, or on demand in response to symptoms of a bleeding episode or before an activity that may cause bleeding.
- Less severe forms of hemophilia: Clotting factors are replaced on demand, when:
- Bleeding starts, such as after an injury.
- Bleeding is expected, such as before surgery.
- When participating in activities that increase the risk for bleeding, such as contact sports.
What To Think About
Medications can be used to help increase clotting factors when undergoing certain medical or dental procedures. These are effective if you have mild hemophilia. And they are used in combination with clotting factors if you have a more severe form of the disease.
Most complications are successfully managed by the injection of clotting factors. But complications can result from treatment with clotting factor replacement.
Chronic pain from joint damage commonly occurs in people who have hemophilia and have one or more severe bleeding episodes inside a joint every year. Narcotics are the most effective medicines to relieve acute joint pain associated with hemophilia. In some cases, joint replacement surgery may be recommended.
Access to accurate testing may not be available in all areas of Canada, especially in rural areas. You may need to travel to a regional centre for testing.
You may contact your local chapter of the Canadian Hemophilia Society or your local hemophilia treatment centre to find a support group. Talking with other people who have hemophilia may be helpful.
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| Author: | Robin Parks, MS Ralph Poore | Last Updated: October 12, 2007 |
| Medical Review: | Anne C. Poinier, MD - Internal Medicine Brian Leber, MDCM, FRCPC - Hematology | |
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