I start every year by promising to make meaningful changes in my life. I hope to lose weight, exercise more, live a healthier life, and be a better parent to my children during their bleeding episodes. These New Year’s resolutions sound great, and when I am in my “safety…

Next year’s Hemophilia Federation of America’s (HFA) monthly educational series for patients, caregivers, and healthcare providers opens on Jan. 18 at 7 p.m. EST with a presentation about joint replacements for bleeding disorder patients. The speaker for the first of the 12 HFA webinars planned for 2022 is James…

So I get into the shower, and as I wash my hair, a memory comes flooding back to me. In a moment, I am standing face to face with it. My oldest son was 6 and struggling with a prophylactic infusion of recombinant factor VIII. The needle terrified him…

A friend called to tell me her teenage daughter finally received a diagnosis of mild hemophilia. Her daughter experiences bleeding complications and had been seeking a diagnosis for more than two years. While it is a relief to have one, it is another story to figure out what the…

Helping others is nice. On the most basic level, helping another person can trigger positive emotions. It also creates a sense of belonging and enables one to connect with their community. And from a big-picture perspective, it gives one a sense of purpose, as they are contributing something good…

A single dose of the investigational gene therapy SB-525 (giroctocogene fitelparvovec) continues to prevent bleeds and the need for prophylaxis, or preventive treatment, for at least two years in men with severe hemophilia A. These are the latest results from the five men given the highest dose of the…

During the four weeks leading up to Christmas, many in the Christian tradition observe a season of waiting called Advent. This period of anticipation encourages us to take a fearless and moral inventory of our lives so we can invite the birth of Christ into our hearts properly. We…

My youngest son, Caeleb, is a sophomore in high school. He lives with severe hemophilia A, along with the complication of antibodies that inhibit the infused factor’s ability to stop bleeding episodes, and chronic pain is proving to be a significant issue for him. Caeleb’s right knee and ankle…

Monthly treatment with the investigational medication fitusiran can reduce bleeding in people with hemophilia A and B, with or without inhibitors, according to data from two Phase 3 clinical trials. “We are encouraged by the data from these initial Phase 3 studies demonstrating fitusiran’s potential as a new…

Many young people enter adulthood with dreams and goals in mind. The burning desire to attain these goals drives them to carry on through hardships and challenges. But for people with chronic illness, achieving goals can be harder, as they may face more obstacles related to their condition. It may…