Figures in the World Federation of Hemophilia (WFH) global annual survey indicate, by their absence, that there is under-recognition of bleeding disorders in women. The WFH and its national member organisations (NMOs) are working to raise awareness and improve the diagnosis of care of women with bleeding disorders globally, regionally and locally. WFH initiatives include a global programme focused on improving the diagnosis, care and treatment of women with von Willebrand disease (VWD), and programmes involving education and training in conjunction with NMOs in countries including Honduras and Malaysia. NMOs in Slovakia, Latvia and Sweden describe their local activities. The Slovak Hemophilia Society is in the process of establishing a Women’s Committee and considers peer support and network building as essential tools in addressing the issues faced by women with bleeding disorders. In Latvia, access to resources is difficult and von Willebrand factor is not available. There is concern in the Latvia Hemophilia Society that the fundamental human right of access to healthcare is not being met. It supports WFH initiatives through education and advocacy, and believes that the voices of women with bleeding disorders will be better heard through working together. The Swedish Hemophilia Society’s Women’s Project has worked since 2006 to promote better care for women with bleeding disorders and to raise public awareness. Despite resistance, their campaign to increase the identification of girls and women with VWD, improve diagnosis and care, and raise awareness has been well received by healthcare professionals and has had extensive media coverage.
Prolonged menstrual bleeding interferes with daily life and causes marked blood loss, resulting in anaemia and fatigue. Treatment centres should address the issue of heavy menstrual bleeding (HMB) with pre-pubertal girls in advance of their first period, in order to best prepare them. It is common for a bleeding disorder to be overlooked in primary care and in gynaecology clinics, and women sometimes struggle to get a correct diagnosis. There are cultural taboos that inhibit open discussion of menstruation, and women tend to minimise the severity of their symptoms. Health professionals should work to destigmatise the issue and seek an accurate account of bleeding severity, with diagnosis and treatment provided in a joint clinic combining gynaecology and haematology expertise. Treatment should be individualised, taking into account personal, social and medical factors, with the aim of improving quality of life. Great care is needed with regard to choice of language when talking about treatment, and treatment centres should consider offering open access to women who need support in dealing with adverse effects. National member organisations have an important role to play in educating people with bleeding disorders, health professionals and the wider public about the burden of HMB associated with bleeding disorders.