Patients can learn more about their treatment options by consulting with their physician and by visiting any of the hemophilia treatment centers funded by the federal government and established nationwide. Patients are urged to contact their physician to learn more about these centers. Parents of children with hemophilia can learn about the disease and how to monitor and treat their child’s condition.

There is no cure for hemophilia. The main treatment for hemophilia is replacement of the clotting factor that the patient is missing. For example, patients with hemophilia A will have factor VIII injected into the bloodstream, while patients with hemophilia B will have factor IX injected. This replacement clotting factor comes from human donors or from a synthetic variety of clotting factor called recombinant factor that is created in a laboratory.

Injections of factor VIII or factor IX can be used to prevent bleeding or to stop it after it has begun. Patients with moderate hemophilia will likely need injections only when problems arise, such as after an injury or before participating in an activity that could potentially cause cuts or other injury.

Patients with severe hemophilia often undergo preventive injections either long-term (two to three times a week, continually) or short-term (several times over the course of a few months). The purpose of these injections is to keep the amount of clotting factors high at all times so that bleeding will not get a chance to start. However, not all people with severe hemophilia receive preventive injections.

Clotting factor replacement therapy is often given in the patient’s home. In many cases, patients or their parents learn to administer the treatments. In addition, patients who undergo clotting factor replacement on a long-term basis may have a vein access device surgically implanted to make it easier to tap into a vein during treatments. There is a risk of infection with these devices.

Injections of clotting factors can stop bleeding very quickly. Patients with any type of hemophilia are urged to seek prompt treatment anytime they have bleeding problems. This will help prevent complications that can cause long-term damage.

While clotting factor replacement is usually effective, it can be very expensive. Patients should consult with their physician and their insurance company to make sure they will not exhaust their coverage limits for this treatment. In addition, clotting factor replacement does come with some risks. Patients may develop antibodies to the replacement factors. These are proteins that prevent clotting factors from doing their job. About one in five people with severe hemophilia A and one in 100 people with hemophilia B will develop these antibodies during treatments, according to the National Heart, Lung and Blood Institute. When this happens, a physician often will inject larger doses of the clotting factor or try clotting factors from different sources.

Viruses such as HIV and hepatitis can be transmitted through clotting factor injections. However, careful donor screening and testing and preparation of blood products have resulted in no documented cases of such transmission since the mid-1980s. Recombinant factor, which is not drawn from human blood, cannot transmit such viruses. It is theoretically possible that other disease-producing pathogens could be transmitted in clotting factors, although no known cases of other transmissions have been identified.

Finally, patients may benefit from other treatment approaches. A synthetic hormone called desmopressin is sometimes used to treat patients with mild to moderate hemophilia A. This drug is given by injection or nasal spray and promotes release of both clotting factor VIII and von Willebrand factor (which helps to bind platelets) in blood vessels.

Medications known as antifibrinolytic drugs help keep blood clots from breaking down. They are used in pill form and are often given to people with hemophilia before dental work, and to treat mild bleeding in the intestines and bleeding from the mouth or nose. For mild bleeding (e.g., tooth extractions) these drugs are often effective alone, although they are frequently used with other clotting factors when heavy blood loss is a possibility (e.g., invasive surgery).

Infusions of blood plasma usually are sufficient to stop bleeding in patients with hemophilia C, because they restore the missing blood factor XI. Blood infusions are used for this type of hemophilia because there is currently no commercially available synthetic factor XI available in the United States.

In some cases, hemophilia causes damage to the joints of patients. Physical therapy can help restore functioning to these joints. However, severe damage may require surgery to replace the damaged joint with an artificial joint.

Hemophilia prevention involves genetic counseling. Women can find out if they are carriers or, if they know they are, they can receive prenatal testing to see if their child has hemophilia. However, the disease itself cannot be prevented.