What is a hemophilia carrier?

A hemophilia carrier is a female who carries a genetic change for hemophilia. Hemophilia is an inherited condition in which blood doesn’t clot normally, leading to prolonged bleeding after injury or surgery, or with menstruation Males with hemophilia may experience serious bleeding problems and may require lifelong treatment. Hemophilia carriers may have no bleeding problems, or they may experience bleeding which may affect health and quality of life.

Genetic changes in one of two genes (the factor 8 gene or the factor 9 gene) cause hemophilia. These genes tell the body how to make the factor 8 and factor 9 clotting proteins, and are carried on the X chromosome. Males have only one copy of the X chromosome, and females have two. If a male has a harmful genetic change, or mutation, in the factor 8 or factor 9 gene on his X chromosome, his body is missing the ‘recipe’ for factor 8 or factor 9, leading to serious bleeding problems. If a female has a mutation in the factor 8 or factor 9 gene on one of her two X chromosomes, she has a back-up copy on the other X chromosome. Her body still has one ‘recipe’ for the factor 8 or 9, but the amount produced may be decreased. Factor levels in hemophilia carriers vary, and bleeding problems may or may not occur.

Hemophilia can pass hemophilia on to their sons, or to their daughters (who could also be hemophilia carriers). Hemophilia carriers sometimes have a history of hemophilia in their families, but not always. A woman with no family history of hemophilia can still be a hemophilia carrier.

You MAY be a carrier of hemophilia if you are:

  • the daughter of a hemophilia carrier
  • the mother of a child with hemophilia, and no one else in the family has hemophilia
  • the sister, mother, maternal grandmother, aunt, niece or cousin of a male with hemophilia or a carrier of hemophilia.

You ARE a carrier of hemophilia if you are:

  • the daughter of a man with hemophilia
  • the mother of a child with hemophilia and the relative of another person with hemophilia
  • the mother of two or more children with hemophilia

What symptoms may occur in hemophilia carriers?

Hemophilia carriers may experience a variety of bleeding problems, or they may experience no symptoms at all. In general, the risk for bleeding in hemophilia carriers is related to their factor levels. The lower the factor level is, the more severe the bleeding symptoms are likely to be. Symptoms may include:

  • Heavy/prolonged menstrual bleeding
  • Abnormal/irregular vaginal bleeding
  • Painful menstrual bleeding
  • Bleeding after childbirth
  • Nosebleeds
  • Increased bruising
  • Prolonged bleeding from minor wounds
  • Significant bleeding after trauma or surgery

How is bleeding in hemophilia carriers treated?

The gynecological bleeding that may occur in hemophilia carriers requires special attention and treatment. Treatment may include:

  • Medications (hormonal, antifibrinolytic, or desmopressin)
  • Surgical (for women who have completed childbearing)
  • Multidisciplinary management of pregnancy and delivery

About treatment for hemophilia carriers at Children’s

Children’s Cancer and Blood Disorders Program achieves outcomes that rank among the top national programs and cares for more than two-thirds of Minnesota children and adolescents with blood disorders. Care for hemophilia carriers is provided through a division of the cancer and blood disorders program called the Center for Bleeding and Clotting Disorders. Through the center, families have access to the newest and most promising treatments and receive care spearheaded and coordinated by a board-certified hematologist/oncologist.

Contact us

If you are a family member looking for a Children’s hematologist or oncologist or wanting to schedule an appointment, please call our clinic at Children’s – Minneapolis at 612-813-5940.

If you are a health professional looking for consultation or referral information, please call Children’s Physician Access at 1-866-755-2121 (toll-free) and ask for the on-call hematologist/oncologist.