Getting diagnosed with hemophilia is a whirlwind. It doesn’t matter if someone is diagnosed at birth or in their 40s: Their world is turned upside down. It is terrifying. Life is changed forever. I feel Father Anthony DeMello put it best in his…
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When my son Caeleb was younger, we had periods when we spent more time in the hospital than at home because of his hemophilia complications. During those times, our family moved heaven and earth to stay connected. Caeleb was often admitted to the University of New Mexico Hospital’s…
It’s hard to believe that my 16-year-old son, Caeleb, is moving into adulthood. He is not approaching adulthood, but moving toward it, and he still has much to learn about managing hemophilia. At a recent annual appointment at the hemophilia treatment center (HTC), a nurse quizzed him about what…
A single dose of the investigational gene therapy BAY 2599023 safely promotes a sustained production of factor VIII (FVIII),  effectively preventing spontaneous bleeds in people with severe hemophilia A, a Phase 1/2 trial shows. Two of the six patients treated to date in this clinical study, both given the…
CSL Behring will donate 500 million international units (IUs) of coagulation factor therapy to the World Federation of Hemophilia (WFH) in an effort to promote reliable access to treatment for bleeding disorders, including hemophilia, across more than 60 developing countries. The donation marks the fifth multiyear…
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…
Cazandra and Joe MacDonald share their 37-year journey together, from a chance meeting in college to raising two sons with severe hemophilia. They reflect on parenting with chronic illness in the family, the commitment that has kept their marriage strong, and the music and laughter that have carried them through.
The 2024 Paris Olympics have been a mesmerizing spectacle of human achievement and have captivated my attention for more hours than I care to admit. Sacrificing sleep to witness the gymnastics finals live was a decision I’ll never regret. The countdown to the end of the Olympics is already painful.
The protein missing or defective in people with hemophilia A, called blood coagulation factor VIII (FVIII), is able on its own to stimulate immune responses in a mouse model, a study suggests. This immune response to FVIII is dependent on a set of distinct immune cells within the spleen,…
My husband, Jared, and I are on the cusp of making a major life decision. This decision had always been part of our long-term plan. We just didn’t expect it to happen so soon. Still, one event led to another, and we found ourselves standing before the option we are…