Testing for carrier status
Tests are available to determine if a female carries the haemophilia gene. Please see our factsheets gene carrier 1 and gene carrier 2 for more information. A genetic counsellor can help with decision-making prior to having a genetic test.Bleeding symptoms in carriers
Around one-third of haemophilia carriers have low levels of factor VIII or IX themselves, and may experience bleeding symptoms similar to those described in people with mild haemophilia. A carrier with low levels of clotting factor would bleed for longer than usual. This is known as being a symptomatic carrier, although some haemophilia centres will also refer to this as mild haemophilia.When someone is known to be a carrier, it is important to establish whether they are symptomatic, as treatment may be needed to control excessive bleeding in the event of surgery, childbirth or some dental procedures. The first step is to ask for a referral to a haemophilia centre where blood tests can be carried out to check factor levels. Self-referral in this way is well-established when there is a history of haemophilia in the family.
Heavy menstrual bleeding (menorrhagia)
Symptomatic carriers of haemophilia may experience heavy and prolonged menstrual periods, which are often described as having the greatest impact on the quality of life of women with bleeding disorders.Every woman is different, so it is impossible to define a “normal” period. Statistically, the average blood loss from an entire menstrual period is between 30 – 40 ml. Blood loss of above 80ml, equivalent to about four tablespoons or half a small teacup, is considered heavy.
Heavy periods are difficult to measure, but signs include having to change towels or tampons every couple of hours or having to wear both types of protection at the same time, getting up at night to change protection, losing large clots and “flooding” (sudden flows of blood that soak through protection or clothing).
The Pictorial Bleeding Assessment Chart is a tool used by healthcare professionals to determine whether menstrual loss is heavy. By completing the chart during your period you can assess whether menstrual loss may be classed as heavy. Please note that this is only a guide and you should always seek medical advice.
(published with permission in writing from:http://www.womenbleedtoo.org.uk)
