The likelihood that teenagers and young adults with hemophilia will use a prophylactic replacement therapy as prescribed is mostly influenced by their level of responsibility in taking their infusions, and their own estimates of risk for each activity, a study suggests. To improve treatment adherence, doctors should discuss its importance during…

Buckets. Buckets and buckets of tears. That’s the only way I can describe the tears I have shed over the years because of living with hemophilia in my home. Both of my sons have had their own struggles with hemophilia and inhibitors, and the tears I have shed…

I’ve previously written about fellow Floridian Kayla Mack, a woman in her 50s who has Type 3 von Willebrand disease (VWD). Her severe bleeding disorder is similar to those who deal with severe hemophilia, as her blood clotting factor VIII levels are nearly negligible. Her von…

I couldn’t believe Caeleb was about to get his first dose of Hemlibra (emicizumab-kxwh). I have been following several people whose children participated in the Hemlibra study (NCT02622321) before the Food and Drug Administration approved the therapy, and I saw how it changed their lives. After…

  I had the amazing privilege of speaking to the women of the Gateway and Midwest hemophilia associations at their annual retreat for women with bleeding disorders. There is just something about folks in the Midwest. They are kindhearted, compassionate, and tons of fun. Every time I…

Most caregivers or patients with hemophilia who were on preventive treatment were satisfied or very satisfied with the Florio Haemo smartphone app, even after prolonged use, a survey study suggests. The app lets patients track their infusions, bleeds, pain, and activities, and helps them manage their medication stock.

I live with depression, anxiety, and chronic pain, and I rely on talk therapy at least once a month to keep my emotional well-being in check. The process of talking through my emotions and trusting a professional to give me new perspectives on the issues I deal with brings…

I marvel when I watch reporters on the news who can deliver their reports in the midst of gunshots, riots, battles, and air raids, events that many in the U.S. might find difficult to comprehend. These brave men and women seem always prepared to hop on a plane to anywhere…

I’m trying to accept that my youngest son, Caeleb, is a college freshman. People say that time flies by, and we should enjoy our children when they’re little. Those people are right. As my son begins college, I’m apprehensive. I long for the days when I’d go into school before…

I will never forget the first time the Hemophilia Federation of America asked me to facilitate a discussion group for parents of the newly diagnosed, at the federation’s annual symposium. About 30 parents attended, each with their own issues regarding their children. I sat in my chair and quickly…