HOW I TREAT BLEEDING IN WOMEN AND GIRLS WITH HEMOPHILIA/ HEMOPHILIA CARRIERS

Historically the impact of hemophilia for female carriers was believed to be restricted to their male offspring. Recent studies have highlighted the increased bleeding experienced by many hemophilia carriers, challenging traditional concepts of X-linked inheritance. These data have resulted in a mindset shift in the haemostasis community, culminating in the 2021 ISTH update on classification of hemophilia carriers. Women and girls with reduced factor VIII (FVIII) /factor IX (FIX) levels <0.40 IU/mL are now recognised as women and girls with hemophilia (WGH). Furthermore, hemophilia carriers who experience excessive bleeding despite normal FVIII/FIX levels are termed symptomatic carriers. Despite these changes, the impact of historic misconceptions surrounding hemophilia carriership remains and many families and healthcare providers may still believe that hemophilia carriers are at no risk of increased bleeding. Education is key to address these ongoing challenges and engagement with both hemophilia communities and physician organisations is critical. Hemophilia treatment centers must endeavour to ensure access for all hemophilia carriers and availability of services appropriate to needs of hemophilia carriers and WGH throughout their lifespan. In contrast to past publications that focus on pregnancy, in this article we address bleeding in hemophilia carriers and WGH at different life stages, including the impact of delay on diagnosis and the management of reproductive tract and joint bleeding.