An immersive multimedia exhibit, which features portraits by renowned photographer Rankin, seeks to educate about life with hemophilia and the disease community’s hope for the future. The exhibit, called “Portraits of Progress,” is a collaboration between biotherapeutics company CSL Behring and Rankin, a British photographer who has done…

Nothing makes me happier than when my oldest son, Julian, is home and my family is all under the same roof. We cook, laugh, and watch movies. My happy place is with my husband and two sons. One night over dinner, our conversation moved toward the high school band…

The levels of blood clotting factors, physical activity, and bleeding history are all potential risk factors for future bleeds in hemophilia patients under preventive therapy, a small review study from Canada suggests. “These and other risk factors for bleeding could be combined in a risk assessment model (RAM) for…

Extended half-life (EHL) blood-clotting factor products are safe and effective at preventing bleeds during minor and major surgeries in people with hemophilia, according to a real-world study in Nordic countries. While dosing recommendations in the perioperative period, or the period around surgery, vary across Nordic hemophilia treatment centers…

What happens when a symptomatic hemophilia carrier needs minor surgery? Will her increased risk of bleeding be recognized? The story of Kim H. came to my attention on Facebook. She is 39 years old and lives in Pennsylvania. I recently interviewed Kim over Zoom, as her story is important.

Symptoms of pain, anxiety, and depression generally increased with disease severity in people with hemophilia and were also associated with a lower quality of life, according to a recent survey involving patients, caregivers, and healthcare providers. While many surveyed individuals felt their pain was adequately addressed in the clinic, fewer…

My biggest fear for my sons, who live with severe hemophilia, is an auto accident. When my oldest son, Julian, began to drive, I impressed upon him anew the importance of wearing a MedicAlert emblem. He wore it like dog tags for years when he was younger,…

Recently, my husband, Jared, and I stumbled upon a local shoemakers’ trade bazaar at the city hall. We just moved to a new home in a brand-new city at the start of the year, and Marikina just so happens to be the “Shoe Capital of the Philippines”! One thing…

Growing up in suburban Milwaukee, I saw the world through a self-employed lens. My grandfather sold and repaired typewriters, a business he started in downtown Chicago in 1951, a time that must have been most colorful. My family settled in Milwaukee, where my father became the largest independent distributor of…

The rate of intracranial hemorrhage (ICH) — a bleed in the brain — is higher in children and adults with hemophilia than in the general population, an Italian study suggests. ICH rates were particularly high among adults with mild disease and with high blood pressure. Most patients received only…