Haemophilia – Issues for Women and Girls

  • Haemophilia is caused by an alteration in the gene making factor VIII (8) or IX (9)
  • Men and women can have the genetic alteration causing haemophilia and pass it on to their children
  • Many women who carry the gene do not have bleeding symptoms
  • Some women who carry the gene can have a bleeding tendency
  • Symptoms in women include bruising easily, heavy or long menstrual periods, bleeding for a long time after childbirth, surgery, medical procedures, dental extractions, injuries or accidents
  • If a female’s factor levels fall in the range for mild haemophilia (5-40% of normal clotting factor), she may also be referred to as having "mild haemophilia".
  • In very rare cases, some girls or women have particularly low factor levels causing them to have moderate or severe haemophilia, and they may also have joint or muscle bleeds
  • All females who carry the gene should have testing for their clotting factor levels. Unlike males with haemophilia, where the factor level is the same within the same family, the factor level in females who carry the gene is unpredictable and varies between family members.
  • Women and girls with lower factor levels should have testing for their factor levels periodically, as their factor levels may change with age, pregnancy and hormonal medications. If their factor level is low, they will need a treatment plan to prevent bleeding problems and manage any situations that occur.

For more information, visit the Carrying the Haemophilia Gene section on the HFA web site

Source: Haemophilia Foundation Australia. Haemophilia. HFA: Melbourne, 2013.

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