Women with severe haemophilia (i.e. clotting factor levels <1% of normal) have two copies of the faulty gene – one on the X chromosome inherited from their father and one on the X chromosome inherited from their mother. This is very rare.
If you are a woman with haemophilia, it is more likely that you have one faulty copy of the gene and one normal copy. This means you are a ‘carrier’ and likely have enough clotting factors from your one normal X chromosome to prevent serious bleeding issues. However, up to 50 percent of carriers may have an increased risk of bleeding.
Women who have bleeding related to haemophilia are sometimes known as ‘symptomatic carriers’. You may also be referred to as having mild haemophilia if your clotting factor levels fall within the range for this i.e. 5–<40% of normal clotting factor.
Examples of having a bleeding tendency or symptoms may include:
- Bruising easily.
- Heavy menstrual bleeding.
- Prolonged bleeding after childbirth.
- Excessive bleeding after dental surgery or extractions, other surgery or accidents.
If you are a carrier of the haemophilia gene, you should have your clotting factor levels tested periodically. This is because these may change over time with age, pregnancy and hormonal medications. If clotting factor levels are low, a treatment plan will be developed to manage bleeding if it does occur or to prevent it. Your Haemophilia Treatment Centre can provide you with more information.
Information for teenage girls
If you are a teenage girl, it’s important to know that haemophilia can have an impact on a number of areas of your life including relationships and sex, and risks associated with tattoos and piercings, and drug and alcohol use. Heavy menstrual bleeding may also occur in women with haemophilia, so it is important that you know what to expect and how to manage this.
Here are a few tips to help ensure that you are not caught off guard:
- Keep a record of your periods so you know when your next one is due.
- Keep a small make up bag in your school bag or handbag with some tampons / sanitary towels.
- Use a new sanitary towel just before you go to bed so there is less chance of flooding or leaking.
- Wear dark coloured clothing so that if an accident does happen the stain will not appear as visible.
Teenagers are often embarrassed to talk about their bodies around their parents. You may also feel uncomfortable discussing these issues with your girlfriends, especially if they don’t have a bleeding disorder. However, you should try to talk to a member of your healthcare team in relation to any issues or concerns you may be having – and let them know if you would prefer to speak to them without your parents being present. Remember, your healthcare team is there to discuss these issues with you and you should not feel embarrassed. Rest assured that they have had similar discussion with many young women before you.