We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families. • growing up with a dad with severe hemophilia A • invisible symptoms in teen years and surgery complications • being told “just a carrier” versus getting a real diagnosis • marriage, militar...
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We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families. • growing up with a dad with severe hemophilia A • invisible symptoms in teen years and surgery complications • being told “just a carrier” versus getting a real diagnosis • marriage, militar...
Partnering with your providers to make patient choice a priority featuring Patricia "Trish" Underland, R.N.
Hope Charities
1 hour 15 minutes
2 years ago
Partnering with your providers to make patient choice a priority featuring Patricia "Trish" Underland, R.N.
In this episode, we talk about the history of the Hemophilia community and the many transitions of treatment and therapy through the last 30 years in the United States. Trish Underland's background as a nurse care coordinator at the Hemophilia & Bleeding Disorders Treatment Center at Johns Hopkins HTC shares her experiences of working with patients to improve outcomes. Trish provides an excellent perspective on the important role that plasma-derived products and PK studies play for people...
Hope Charities
We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families. • growing up with a dad with severe hemophilia A • invisible symptoms in teen years and surgery complications • being told “just a carrier” versus getting a real diagnosis • marriage, militar...
