It usually starts as an innocent question in an attempt to make friendly conversation with my husband, Jared, and me. “So, how’s Jared? How’s his health?” Those who ask this question are often aware that Jared has hemophilia B and a seizure disorder. But not everyone knows how…
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I am still waiting to hear from our hemophilia treatment center about whether our insurance will cover Hemlibra (emicizumab-kxwh) for Caeleb. Honestly, I’ve put it out of my mind for a bit because I know it is not a “done deal” until I have the product in my…
Apologies aren’t easy. Sometimes when hurtful words are shared, an apology is in order. Likewise, a mistake that affects another person is also a time when an apology is needed. But why do people apologize when something is out of their control? My youngest son, Caeleb, is 16 and lives…
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…
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…
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…
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.
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…