The National Hemophilia Foundation (NHF) will train female members of its National Youth Leadership Institute to deliver free art workshops to empower 100 young women across the country affected by bleeding disorders.
Hemophilia and von Willebrand disease (VWD) can affect both boys and girls. Those with more severe forms deal with bruising and internal bleeds into their joints and muscles, which is painful and debilitating. Girls with these bleeding disorders may experience additional complications due to menstruation and childbirth. It is common for girls to feel shame about these issues, which can lead to not seeking medical diagnosis and treatment.
This project will utilize a peer education model along with experiential art techniques to assist girls in recognizing the impact of their bleeding disorder on their health, and providing a process through which they will build skills and share with each other. One of the goals of the workshops will be to encourage the girls to speak openly with parents and health care providers regarding their current health status, and the need for medical attention if they experience bleeding problems.
The art that is created by the girls during these workshops will be displayed at future national bleeding disorder conferences. The art displays will be used to educate health care providers and others in the bleeding disorder community about the challenges, fears and concerns girls have regarding their bleeding disorder status. The art will also serve as beacons of hope for other girls and women affected by a bleeding disorder.