Prevalence of heavy menstrual bleeding, iron deficiency, iron deficiency anemia, and treatment in women with von Willebrand disease-a cohort study.

Background: A major challenge for women with von Willebrand disease (VWD) is heavy menstrual bleeding (HMB). HMB is linked to iron deficiency (ID) and ID anemia, both of which are related to morbidity that can impair cognitive and physical health. Objectives: The aim of the study was to evaluate the prevalence of HMB, ID, ID anemia, the treatments used, and the impact of HMB among women aged 18 to 55 years with VWD. Methods: A cross-sectional nationwide study was conducted in Sweden. Women aged 18 to 55 years with VWD were recruited from the National Registry. Data collection included questionnaires assessing HMB, prevalence, treatment, and its impact on life. Hemoglobin and ferritin levels were collected, and clinical data were retrieved from medical records. Results: A total of 208 women were identified, and 136 (66%) participated in the study. Data revealed that 45% of the women had low ferritin levels (<30 μg/L), and 18% had hemoglobin levels < 12.0 g/dL. Tranexamic acid was used by 64% of the women, hormone therapy by 37%, von Willebrand factor concentrate by 18%, and desmopressin by 8%. HMB was reported by 66% of the women; HMB significantly impacted life, particularly work/school, physical activity, and intimacy. Conclusion: The high prevalence of ID highlights the importance of regular follow-up and proactive iron management. The results indicate that more women with type 1 and 2 VWD may require von Willebrand factor concentrate, despite it generally being considered a last-line treatment. The loss to follow-up observed in a substantial proportion of women underscores the need for improved long-term care strategies to prevent complications.