Passion motivates us and puts a fire in our belly to strive for something outside ourselves. Without a sense of purpose, we become less motivated to rise above our current situation and struggle to find a key ingredient to a happy life. As we strive to find our way,…

A telerehabilitation program, wherein physical therapy exercises were delivered to patients by a professional via video calls, was deemed safe and effective at improving the physical condition of people with severe hemophilia, according to a small study in Chile. Patients reported a high degree of satisfaction with the intervention,…

My daughter, Cittie, is now 3 and a half years old. She’s grown so much over the past years, from a tiny and helpless little baby to a more independent preschooler with a mind of her own. She’s gotten good at expressing what she likes and dislikes. She’s also…

Living with any chronic illness comes with a financial burden. Hemophilia, in particular, is extremely rare and extremely expensive. What follows is a summary of the expenses, insurance, and savings that I’ve encountered in my journey with bleeding disorders. Expenses Most years, I’m sure to hit the $7,000+…

Last week, I gave in to my 79-year-old mother’s pleas to travel from Florida to the Midwest for a family gathering in Illinois. She is immunocompromised, and I am her caregiver. The pandemic has kept us off public transportation, as she is vulnerable to COVID-19 and any other infection from…

Japan’s Ministry of Health, Labor and Welfare has extended Hemlibra (emicizumab)’s approval to include routine prophylaxis to prevent or lower the frequency of bleeds in people with acquired hemophilia A. Its decision comes seven months after Hemlibra’s maker, Chugai Pharmaceutical, applied for extended use. Hemlibra was previously approved in…

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…