Physical therapy (PT) plays a crucial role in the management of hemophilia. While it may seem counterintuitive for people with bleeding disorders to benefit from physical activity, PT is essential for overall joint health and pain management. However, my recent journey tells a slightly different tale. It’s a story…
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I first attended a Bleeding Disorders Conference in October 1998. The National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) offered the event during Halloween week in New Orleans. My wife, Cazandra; my oldest son, Julian; and my mother, Ruby, entered our hotel with me, not sure…
I entered the bedroom of my youngest son, Caeleb, one recent morning to offer him my usual cheerful greeting. That’s when I found him lying in bed in excruciating pain. Caeleb has hemophilia A, and years of damage from internal bleeding episodes have left him with little…
I marvel when I watch reporters on the news who can deliver their reports in the midst of gunshots, riots, battles, and air raids, events that many in the U.S. might find difficult to comprehend. These brave men and women seem always prepared to hop on a plane to anywhere…
Preventive treatment with Eloctate (efmoroctocog alfa) for up to five years led to sustained reductions in all bleed types for children, adolescents, and adults with severe hemophilia A, according to data from two Phase 3 trials and their open-label extension study. New analyses of these pivotal trials also…
Last week, I was privileged to attend Genentech‘s Rare Blood Disease Summit at its campus in San Francisco. I’ve been proud to serve on this biotechnology company’s Women in Hemophilia advisory board for the past two years. The invitation-only summit was a small but powerful gathering, bringing together the…
Last week, I attended an alumni meeting for the Austin Presbyterian Theological Seminary in Texas, where I earned my doctor of ministry degree. During my free time, I walked around the University of Texas campus and couldn’t help feeling the energy from all the students who moved like…
The U.S. Food and Drug Administration (FDA) has cleared for laboratory use CRYOcheck Factor VIII Deficient Plasma with VWF, a way of detecting factor VIII (FVIII) deficiency in blood samples. Now available in the U.S., Precision Biologic’s manufactured plasma — the liquid part of blood that…
My husband, Jared, carries his hemophilia well. At first glance, he appears healthy, with a solid physique, and he actively engages in sports. The keloid scars running down his arms contribute to his rugged charm. Some might dub him a model hemophilia patient, an example to follow. During…
Over the next few weeks, I’m taking a short sabbatical. I realized I needed time to regroup, rest, and renew my spirit. Little triggers that crept into my brain warned me I needed to care for myself. Failure to adhere to these warning signs often leaves me angry,…