Bleeding Symptoms in Women with Hemophilia A or B and Carriers

Bleeding Symptoms in Women with Hemophilia A or B and Carriers Highlighted at THSNA Summit 2016.

THSNA 2016 (Chicago, April 14-16): Issues around bleeding symptoms in women with factor VIII or IX deficiency and carriers of hemophilia A and B were discussed during a plenary session at the Thrombosis and Hemostasis Summit of North America (THSNA) and in a poster reporting on the results of the Center for Disease Control and Prevention (CDC) Female Universal Data Collection (“Female UDC”) study. In the oral session, Dr. Robert Sidonio discussed the wide distribution levels of FVIII and FIX levels in hemophilia carriers and controversies around classification compared to the standard severity system: mild (6 to 40%), moderate (1 to 5%), and severe (<1%). He discussed that these factor levels do not necessarily predict bleeding in men or women, and that a variable risk of bleeding has been seen in patients that may even have 40-60% of factor levels. Dr. Sidonio also presented the poster on Female UDC project, initiated in 2009, which collected data from 20 HTCs in the US network between 2009 and 2011. The 73 females with FVIII or FIX deficiency included those with moderate/severe hemophilia (2, 3%), mild hemophilia (36, 49%), normal levels (24, 33%), and unknown (11, 15%). The median age at time of first menstrual period (menarche) was 12 years old, and median age at diagnosis was 13. Just under half (44%) reported 4 or more bleeding symptoms; those with levels suggesting mild hemophilia reported an average of 2.3 symptoms while those with normal levels reported an average of 3.4 symptoms.  There were no statistical differences between the number of bleeding symptoms and the factor activity levels. The most common bleeding symptoms were menstrual bleeding requiring pad changes every 2 hours on the heaviest day (52%), bruises “larger than a quarter” without trauma (50%), iron-deficiency anemia (31%), more than one nose bleed per year lasting more than 10 minutes (28%), bleeding from minor cuts lasing 5 or more minutes (28%), bleeding after surgery (26%), and bleeding during/after a dental procedure (26%).