Since my diagnosis at age 10, I’ve always received treatment at federally funded hemophilia treatment centers (HTCs) — except for a brief period when my insurance didn’t cover my hematologist. Most hematologists don’t specialize in bleeding disorders, which can be complex to diagnose and treat. Without the expert care provided…

People with severe hemophilia A who have two or more self-described problem joints — a person-centric characterization of joints based on underlying joint damage, pain, and mobility impairment, regardless of bleeding — have worse clinical outcomes, including more chronic pain, a new study from researchers in Europe has found.

The added expenses of a bleeding disorder — beyond medical costs — are rarely discussed in our community. Yes, I’m talking about the dreaded M-word, which can evoke many negative emotions. Money affects every part of our lives, and for some of us, our relationship with it results in feelings…

It’s impossible to turn on the TV and not find a reality show, in any of its many types. Some are like staged plays that claim to be real, yet they’re often scripted and orchestrated before they’re shot. Others are more social experiments in which human behavior is observed and…

In the fall of 2023, I was at a work conference in Indianapolis and headed down to the hotel lobby to meet a colleague for lunch. I was excited, as we were going to eat my favorite food: Ethiopian! Suddenly, I felt a sharp, shooting pain in my hip. It…

Hemlibra (emicizumab), a preventive treatment for hemophilia A, reduced pain and improved quality of life for adults and adolescents with the disease, including those with recurrent joint bleeds, a study found. Significant improvements in pain-related quality of life were seen 13 weeks, or about three months, after starting…

Commuting in a crowded metropolis can be a daunting experience. Many cities around the world struggle with inadequate public transportation infrastructure, poor urban planning, and heavily congested roads. In places like metropolitan Manila, where we live in the Philippines, navigating public transportation can feel like a game of survival.

I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly, I despise it being used to describe anyone living with a rare disease or disability. I think it’s the wrong word, as its use can inadvertently minimize the emotional challenges…

Small vesicles in the saliva of people with severe hemophilia A may explain why these patients rarely have bleeds in their mouth and throat. The vesicles contain a protein complex that’s able to induce blood coagulation in these patients, thereby reducing bleeding. The findings may help “develop innovative approaches…

For the first time in Denmark, people with hemophilia B have been treated with the gene therapy Hemgenix (etranacogene dezaparvovec), according to an announcement from CSL Behring, the company that markets the therapy. Hemgenix was cleared for use in the European Union in early 2023, following its…