SickKids Stories

What is hemophilia?
Hemophilia is a genetic condition that affects the blood’s ability to clot effectively. Typically, when a person gets a cut, a type of cell in the blood called platelets stick to the wound to try to plug the cut. Proteins in the blood called clotting factors bind together to form chains to hold the clot together and to help seal the wound. In most people with hemophilia, the clotting process slows because the levels of clotting factor are too low, causing them to bleed for a longer period of time than a person without hemophilia. To learn more about how the body forms clots to stop bleeds, please see Understanding blood clotting.

Types of hemophilia
Since there are many clotting factors in the blood, each factor is numbered. When there are mutations in the gene that codes for factor 8, it is called hemophilia A. When there are mutations in the gene that codes for factor 9, it is called hemophilia B. In both types of hemophilia, these mutations can make it difficult for the liver to produce sufficient amounts of clotting factor. About 80% of people with hemophilia have hemophilia A, while only about 20% have hemophilia B. To learn more about types of hemophilia and their causes, please see What causes hemophilia?

Managing pain and bleeds
Bleeding in hemophilia is usually related to injuries, but it can also occur spontaneously. The bleeding can occur externally, for example from a nosebleed or a cut on the skin. However, internal bleeds (bleeding inside the body) are more common, especially bleeding into the joints or muscles. A teen with hemophilia may be able to sense when they start to bleed, either from a tingling feeling in a joint or by feeling warmth and seeing swelling or redness in the area. They should trust their senses and make sure to speak up when they recognize a bleed. To learn more, please see Hemophilia: Recognizing bleeds.

After a bleed, there is always some degree of pain as pain is the body’s warning system, alerting you that there is something wrong. Bleeds may hurt for a short time (acute pain) or for a longer time (chronic pain). Please see Hemophilia: Managing pain to learn more about acute and chronic pain related to bleeds.

Transitioning to adult care
As teens get older, they will transition from paediatric to adult care. They will also become more independent and begin taking on more responsibilities for their own care. For example, teens may start booking appointments on their own, recognizing when a bleed requires emergency care, following their treatment plan, and communicating their condition to health-care professionals and loved ones. To learn more about this transition process, please see Hemophilia: Switching from paediatric care to adult care. 

AboutKidsHealth is SickKids’ health-education website and features more than 3,500 articles on a range of health topics. For more information on hemophilia and other health topics, visit teens.aboutkidshealth.ca.