At first hesitantly—but then, more confidently, as trust was built—participants attending a recent WFH Nurses Training workshop in Nepal began to share their personal experiences working with patients who have a bleeding disorder. The 2019 Hemophilia Alliance Travel Grant recipient Susan Cutter, who served as one of three facilitators, noted that the discussion helped increase participants’ understanding of the psychosocial impact of bleeding disorders in patients’ lives.
Cutter began her career in social work at the height of the HIV epidemic in the U.S.A, and, in the Nepalese patients, she saw the same resiliency, and the same determination to improve their lives, that she had witnessed years before in the patients in her home country. For many patients, it was their first opportunity to learn about the thought process people like them go through in deciding if, when, and how to tell their extended family, friends, employers and partners about their bleeding disorder and its associated complications.
The participants were amazing! They made great strides in learning about the medical, nursing, and psychosocial needs of individuals with bleeding disorders.
- Susan Cutter
Cutter also notes another area of concern that arose during the workshops: the very low diagnosis rates of females with bleeding disorders in the region. Only a few of the participants had ever met a woman with a bleeding disorder. This was not surprising to Cutter, as an estimated nine in ten women who suffer from a bleeding disorder are undiagnosed and untreated. The WFH recognizes the need to close this gap in diagnosis and launched the VWD Initiative Program to begin working for this underserved portion of our global community.
Cutter happily notes the participants received training to help them educate their community about the common signs of women living with an undiagnosed bleeding disorder.
The Hemophilia Alliance Travel Fund allows U.S.A.-based WFH multidisciplinary committee members to attend WFH international meetings and conferences. The WFH USA proudly acknowledges the Hemophilia Alliance’s generosity and commitment to advancing the knowledge of U.S.A.-based healthcare professionals in the bleeding disorders community. To learn more about the important work the Hemophilia Alliance is doing, click here.