A week ago, my oldest son, Julian, left home to begin rehearsals for a musical that could open doors to a long-term career. The show is a parody of the slasher movie “Saw.” Its producers hope to have him rehearse for a few weeks in San Antonio before sending him…

Switching from on-demand treatment to regular preventive therapy with extended half-life products may mean fewer bleeds, healthier joints, and better quality of life for people with hemophilia. That’s according to a new analysis of Phase 3 study data from trials involving more than 100 hemophilia patients that spanned a…

My fear of letting go of the past stems in part from my anxiety about change. I want my sons, who both have hemophilia, to take control of their lives and be responsible as they move through the world. They leave, but what about me? I’m not going…

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,…

An Instagram account is using well-loved characters from children’s animated movies to create memes that highlight some of the issues people living with chronic illnesses face in their everyday lives. MORE: How kids can explain hemophilia to their friends As reported in The Mighty, the account was set…

Most people with hemophilia A or B who switched from an approved prophylactic (preventive) therapy regimen to once-monthly treatment with fitusiran in the ATLAS-PPX clinical trial had no bleeds over seven months on the investigational therapy, new data show. Fitusiran also reduced bleeding rates regardless of the presence…

My 15-year-old son, Caeleb, is looking for a summer job. We live in a small town, so his choices are limited, and many jobs require applicants to be at least 16. Part of me hopes he waits until next summer to find a job, but he is actively looking. The…

I started writing for Bionews, the publisher of Hemophilia News Today, almost three years ago. However, it recently dawned on me that I never mentioned why I named my column “In the Twinkling of an Eye.” While amazingly simple on the surface, the answer has deep layers that may…

Nearly all men with moderate-to-severe hemophilia B given the experimental gene therapy EtranaDez (etranacogene dezaparvovec) in the HOPE-B trial have stopped using prophylactic therapies, full study results show. Trial data also indicated that EtranaDez, formerly known as AMT-061, is effective in people with antibodies against the viral vector…