Many of us have been there. We’ve walked into a medical office in pain, seeking relief. As the doctor completes an evaluation, we are asked that common and potentially problematic question: “Please rate your pain on a scale of 1 to 10.” I hate pain…

It’s quite difficult to focus on any sense of positivity when bleeds become more frequent. After a bleed-free streak that lasted over six months, it was easy to be disappointed when hemophilia made me feel vulnerable and weak again. It’s not all that bad, though. At times, being bedridden results…

Raising two sons with hemophilia has taught me to be flexible. I have learned that my best attempts to make plans can be thrown out the window in an instant at the onset of a bleed. Treating a bleed, going to the hospital, or accommodating a rigorous infusing schedule take…

The National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) asked Bayer to clarify the risks to the hemophilia community, and the potential effects, of the recent voluntary recall of two defective lots of Kogenate FS anti-hemophilic factor. In a letter sent to Paul…

As I pen this column, my husband, Jared, and I are celebrating a full year of marriage. It’s been a blissful one, with so many milestones reached and memorable moments experienced. Our baby, Cittie, was born six months ago, and since then, life has been tremendously different — in an…

The presence of inhibitors and excessive body weight increase the sense of disease burden felt by parents of children with moderate to severe hemophilia, a study reports. The study “Burden on parents of children with hemophilia: the impact of socio- demographic and child’s medical condition” was published in…

To encourage more women to take part in disease research, the Patient-Centered Outcomes Research Institute (PCORI) has chosen the Hemophilia Federation of America (HFA) and its FIRST project to receive a Eugene Washington PCORI Engagement Award. The HFA’s FIRST project stands for Females in Research Sharing and…

In my experience, raising two children with a chronic illness includes the usual worries that parents and other primary caregivers often face. It also creates issues that directly address medical needs and concerns related to treatment. For instance, not every family deals with spontaneous bleeding into the joints. For…

I have big dreams for my sons. I want them to go to college, have successful careers, and find loving partners. I hadn’t thought that these things would be out of reach for either of them. But I did believe at one time that my mighty warrior Caeleb would be…

An 87-year old woman with acquired hemophilia A (AHA) showed no adverse events or major bleeding events after starting on Hemlibra (emicizumab). The findings suggest that Hemlibra may be a better option for bleeding prevention in AHA patients than bypassing agents, the team said. The study, “…