I’m standing in line at a convenience store after my appointment at the salon. It’s almost lunchtime and my stomach is grumbling, as I left our condo without having eaten breakfast. My husband, Jared, who has hemophilia and a seizure disorder, had a series of seizures the day before…

Jason Fulton was accepted to the University of the Pacific in Stockton, California, to pursue a graduate degree in pharmacology and help hemophilia patients like himself. But the 22-year-old knew then he likely would not achieve his dream. At 17, he learned the blood he was receiving to treat…

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…