The popular and public perception of bleeding disorders is of an exclusively male inherited bleeding disorder. Historically, this perception was most famously seen as reality with the fact that Queen Victoria was known to be a carrier of haemophilia and through her, haemophilia was found in the royal families of Great Britain, Spain and Russia. Women rarely suffer from severe haemophilia either via genetic inheritance or mutation, or via a process known as lyonization of the chromosome. However, it is quite common for carriers of haemophilia to have relatively low factor levels (less than 50%) which categorise them as having mild haemophilia.
There are 54 females currently diagnosed in Ireland with haemophilia A and 44 with haemophilia B. The vast majority of these are carriers with factor VIII or factor IX levels which put them in the category of mild haemophilia. Thankfully, they will not suffer from spontaneous bleeds into joints or muscles so characteristic of severe haemophilia but they may require factor replacement therapy following trauma, surgery or childbirth and menstruation can pose problems beyond the normal range of the female experience.
von Willebrand\’s disease is more democratic from a gender perspective, affecting both sexes. Indeed of the 918 persons in Ireland known to have von Willebrand\’s disease, 537 are female. Again, many will not require therapy on a regular basis but for females, menstruation is often characterised by menorrhagia, pregnancy by additional concern about bleeding and contraception more often a therapeutic requirement than a life choice. Rarer bleeding disorders also affect females.
Women living with bleeding disorders often have concerns around menstrual problems, pregnancy, carrier status and inheritance and treatment. Knowing about your particular bleeding disorder and its severity, symptoms and treatment is vital. Registering at the National Coagulation Centre and getting the expert medical advice and assistance needed is the path to helping you cope with a diagnosis of a bleeding disorder or carrier status.