Women Affected by Hemophilia
Women who are carriers of hemophilia have one ‘normal’ X chromosome and one ‘abnormal’ X chromosome. The normal X chromosome produces enough clotting factor to protect carriers from the most severe form of hemophilia. But – clotting factor levels vary widely in women who are carriers. Learn more about what it means to be a carrier
Many carriers have a clotting level between 30% and 70% of normal and do not usually suffer from severe bleeding, although they may suffer from the most common symptom – heavy menstrual bleeding. However, some carriers have less than 30% of the normal level of factor VIII or IX. These women are considered to have mild hemophilia. Up to 60% of carriers are estimated to have bleeding problems.
When to see your doctor: The symptoms of abnormal bleeding
Because hemophilia is thought of as a ‘male’ disease, many women who notice the symptoms of a bleeding disorder go undiagnosed. The most common symptoms of a bleeding disorder in women include:
- Heavy or prolonged menstrual bleeding (menorrhagia)
- Abnormal bleeding after childbirth
- Easy bruising
- Frequent and prolonged nosebleeds
- Prolonged bleeding after dental procedures
- Abnormal bleeding after surgery or trauma
“Extremely heavy periods ruled my life and I saw doctor after doctor. Later, I had severe painful bruising after surgery and was told it was normal. Years later, I was diagnosed with a bleeding disorder.”
More on menorrhagia
Heavy, prolonged bleeding is the most common symptom of a bleeding disorder in women. When this happens throughout a woman’s period, it’s called menorrhagia. Many women don’t realize that menorrhagia could be the sign of a bleeding disorder – and don’t see their doctor. It’s common for women to think, “I always have heavy periods” or “All the women in my family bleed a lot.”
Menorrhagia can have significant effects on a woman’s life, including chronic fatigue, embarrassment from ‘bleeding through’, missed work, severe pain during a period (dysmenorrhea), and mood changes. An even more serious consequence is that many women have had hysterectomies because of an undiagnosed and untreated bleeding disorder.
In order to determine if you have a bleeding disorder, your doctor will do a test to measure the level of two clotting factors (Factor VIII and IX) in your blood. A genetic test may also be done to see what kind of gene mutation you have. Learn more about carrier testing
Monitoring girls during puberty
Menstrual bleeding can be especially heavy at the time of a girl's first period. When there is a family history of a bleeding disorder, a girl should be closely followed through puberty. The medical team should include a:
- Hematologist with experience in treating bleeding disorders; and
- Family physician or pediatrician.
Pregnancy and childbirth
Most women have few bleeding problems during pregnancy, or during childbirth. But it still is very important for the woman’s healthcare providers to be aware of her carrier status so that plans can be made for a safe delivery. This includes ensuring special safety measures are in place during childbirth to avoid injury to the mother, and child. As well, clotting factors may have to be monitored during pregnancy, especially as the date of delivery approaches.
Precautions for women
Women with a bleeding disorder need to follow some precautions to help prevent excessive bleeding. For example, she should never take a drug that can affect the platelets (clotting proteins) in the blood. These include:
- Aspirin® (ASA)
- Drugs containing Aspirin® (e.g., Midol®, Alka-Seltzer®)
- Non-steroidal anti-inflammatory drugs (e.g., Advil®, Aleve®)
Often, these drugs are used to treat menstrual cramps, but can actually make bleeding worse. Always speak to your doctor or pharmacist about a drug you are planning to take to ensure if it safe for you to do so.
A booklet for people living with milder forms of hemophilia, developed by the Atlantic Hemophilia Nurses Group of the Canadian Association of Nurses in Hemophilia Care (CANHC).Download Booklet on Mild Hemophilia