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…

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…

There are some very fortunate people who do not experience illness. They often come from families who rarely even catch the common cold. Then, there are those of us who know all too well how illness can affect a family. My mother suffered from several chronic conditions when I was…

In addition to having hemophilia B and von Willebrand disease, I also am a caregiver to my 79-year-old mother, whom I live with in Florida. Avoiding COVID-19 has been difficult for us, as she was diagnosed with a severe immune deficiency at the height of the pandemic.

Last week proved a time of celebration in the MacDonald house as my oldest son, Julian, came home to spend a few days with our family before going to Big Bend Ranch State Park for the summer. He successfully auditioned for his first paid acting gig in the show “…

I vividly remember attending my first bleeding disorder conference in 2008. It was overwhelming. The exhibits had products and services that my son would need, and the workshops and topics were new and very unfamiliar. The attendants seemed like they were at a family reunion! How did they…