I like to believe that my husband, Jared, and I have a fulfilling marriage and family life, even with chronic illness. Each day, we make intentional choices that align with what we value most: living a full and happy life. Jared has two chronic illnesses, hemophilia B and…
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I’ll never forget a particular moment in the fall of 1995. I met my wife, Cazandra, at one of our favorite restaurants right after work for an early dinner. As a waitress led us to our table, Caz appeared to be carrying a secret that, if not released,…
One night when my oldest son, Julian, was 6, we sat down at the kitchen table, preparing to infuse factor VIII, a clotting agent, to treat his hemophilia. He held out his arm, and I looked at the vein we called “Old Faithful.” Located on the top of…
In the Bible, there’s a story of a blind man on the side of the road begging for Jesus’ help. Jesus spat on the ground, made mud, and put it on the man’s eyes. He then instructed the man to go to the water and wash the mud…
I’ve been struggling with my mental health lately. For the past two years, I’ve been juggling two or three freelance jobs at a time while also fulfilling my roles as a mom, wife, and carer to my husband, Jared, who has severe hemophilia B and a seizure…
Patient dosing has been completed in a registrational Phase 3 clinical trial in China testing BBM-H901, Belief BioMed‘s (BBM)’s investigational gene therapy for hemophilia B, the company announced. BBM-H901 is designed to restore the production of factor IX (FIX) — the blood-clotting protein that is faulty or missing…
Spoiler alert: This story ends with a Golden Girl moment with my son. Picture it: Las Vegas, 2015. My youngest son, Caeleb, is 9 years old. He and I tagged along with my wife, Cazandra, for a special event for the bleeding disorders community. My boy, who…
“I know, I know” is repeated in my home numerous times daily. When I hear these words from my 17-year-old son, Caeleb, I want to run away screaming. No, you don’t know! The teenage years are not my favorite. Was I this way when I was a teenager? Unfortunately,…
Switching to Rebinyn (nonacog beta pegol) from other standard or extended half-life replacement therapies led to “robust” reductions in annual treatment costs among hemophilia B patients in Canada, a study based on real-world data reported. Its findings add to an earlier and real-world analysis of patients who…
Marriage is a beautiful thing. People often describe it in flowery terms — “an unbreakable promise of partnership,” “a sacred unity of two souls.” Those who possess a more worldly mindset might regard it as a legal arrangement — albeit a powerful and binding one that changes every aspect…