Traditionally women have done the lion’s share of caring for people with a bleeding disorder. This is because they have generally been the main carer of children and may also have looked after a male partner with haemophilia. Increasingly there has been greater awareness that women can have symptoms of a bleeding disorder. Most often this will be as a carrier of haemophilia, possibly with mild bleeding symptoms, or living with von Willebrands.
Amongst all bleeding disorders apart from haemophilia, women are more likely than men to be diagnosed because of heavy periods (menstrual bleeding) and bleeding after childbirth.
Pregnancy and childbirth require special management. The Glasgow, Edinburgh and Aberdeen Centres hold joint women’s clinics with an obstetrician (childbirth consultant), and provide support to newborn babies with a bleeding disorder.
Heavy menstrual bleeding is twice as likely to affect carriers of haemophilia as all other women, and is extremely common with von Willebrands (even if Type 1, which is the mildest type). You would expect to lose a greater amount of blood each month and have longer periods, with more pain. In mid-cycle there can be further bleeding and pain. The greater loss of blood and therefore iron can cause long-term anaemia.
For decades, heavy menstrual bleeding (whatever its cause) has been managed with tranexamic acid (see p15). Women who are affected by haemophilia A with low Factor VIII levels, or mild-to-moderate Type 1 von Willebrands, can also use desmopressin. The impact of periods can be greatly reduced by going on the (combined) contraceptive pill or having a Mirena coil fitted. But despite these measures it is still possible that clotting factor treatment will be required.
During pregnancy the good news is that your body’s factor VIII (and von Willebrand factor) levels rise (although factor IX doesn’t significantly change).
It is easier to plan the birth if you know if your baby is going to have a bleeding disorder. Its sex can be found out by testing your blood or by ultrasound. If you are a carrier of haemophilia and are expecting a boy, then procedures such as chorionic villus sampling (CVS) can tell the difference between an affected and unaffected male, but there is a 1-2% risk of miscarriage. Increasingly, genetic laboratories are able to detect small amounts of your baby’s DNA in your own blood. This is a safer way of finding out your baby’s sex before birth.
Where’s Mary? Girls and Bleeding Disorders: Symptoms, Diagnosis and Treatment