When it comes to home maintenance and improvement, there are several types of people. Some look the other way when their home needs upgrades due to a lack of time, money, energy, or interest. Others coordinate with repair people who come in and do the necessary work. Do-it-yourself people look…

I’ve been sick for most of this week with digestive issues. This is a chronic condition for me, but it always bothers me when it happens. I’m weak and unable to do much. I must gauge my energy levels and try to squeeze important tasks into the moments I…

People with severe hemophilia A who switch from standard to extended half-life replacement therapies experience fewer bleeds and require less frequent infusions, an analysis of patients in Austria indicates. Whether these gains are reflected in lower overall treatment costs, however, is less clear, its researchers added. Data from this…

The European Medicines Agency (EMA) has validated BioMarin Pharmaceutical’s new application seeking approval of its investigational one-time gene therapy Roctavian (valoctocogene roxaparvovec) for severe hemophilia A. The application was resubmitted to EMA following a request for longer follow-up data from the Phase 3 GENEr8-1 clinical trial (NCT03370913),…

“MacDonald the Older,” which I call my eldest son, successfully auditioned for the International Performing Arts Institute, a national musical theater symposium. He calls me nearly every night to share the great things he learned in different classes. My heart leaps up and down with joy when I hear his…

My youngest son, Caeleb, is embarking on a new adventure and studying for his driver’s test. Once he earns his permit, we’ll take him to the church parking lot for practice. Caeleb is thrilled at the thought of driving to school and band rehearsals. He is growing up and realizing…

One of the good things about being married to a person with disability (PwD) is that I can talk to my husband, Jared, objectively about disability and chronic illness. We often have conversations about it, and we aren’t afraid of self-criticism. In fact, we value it for the sake of…

I recently accompanied my youngest son to his comprehensive checkup at the Ted R. Montoya Hemophilia Program and Treatment Center. Located in Albuquerque and affiliated with the University of New Mexico hospital system, the center serves as our main treatment facility for hemophilia. “MacDonald the Younger” started seeing the…

Preventive treatment with Hemlibra (emicizumab) sustainably improved physical health-related quality of life and led to fewer missed workdays among people with severe hemophilia A without inhibitors, an analysis of pooled data from two clinical trials found. According to researchers, these findings add to previous data showing that Hemlibra…

Two weekends ago, my husband, Jared, had a lengthy bleeding episode. It happened after a fun Father’s Day trip to the zoo with our baby girl, Cittie, and our nanny. We had a wonderful time filled with several firsts since pandemic lockdowns eased, including our first time out of the…