"Everything Was Blood When it Comes to Me": Understanding the Lived Experiences of Women with Inherited Bleeding Disorders.

DISCUSSION: To our knowledge, this is the first study to thoroughly describe the experiences of adult women living with inherited bleeding disorders. We found that these women experience multiple uncertainties around their diagnosis. They conceptualize their bleeding by examining family histories, experience severe symptoms irrespective of their underlying diagnosis, and create identities around their bleeding symptoms, which influence multiple aspects of their life. Next study steps will involve sharing work specifically focused on treatment plans, barriers to care, and factors affecting care access.
PMID: 32979008 [PubMed - as supplied by publisher]

Source: Thrombosis and Haemostasis - September 25, 2020 Category: Hematology Authors: Arya S, Wilton P, Page D, Boma-Fischer L, Floros G, Winikoff R, Teitel J, Dainty K, Sholzberg M Tags: J Thromb Haemost Source Type: research