“Everything Was Blood When It Comes to Me”: Understanding the Lived Experiences of Women with Inherited Bleeding Disorders

Introduction: Despite the manifold symptoms that women with inherited bleeding disorders may experience, no study has specifically sought to understand the lived experiences of these women, nor the barriers to care that they may face. Indeed, the literature on this topic remains sparse. A MEDLINE search assessing literature on access to care for women with inherited bleeding disorders yielded 526 abstracts; of these, only a small subset (N=12) focused on women's health, and less (N=2) made any note of potential barriers to care. Given the lack of data on this subject to date, the objective of this qualitative descriptive study was to understand women's lived experiences with inherited bleeding disorders, and their perceptions around access to care.