Structural joint damage and significant pain are evident in the ankles of people with hemophilia, but the two were not found to be related to one another in a recent study. Researchers suspect that ankle pain may originate in the somatosensory nervous system, which relays nerve signals from the…

There’s one thing I want more than anything: When my sons are grown with their own families, I want them to come home for Thanksgiving (without my having to beg). I dream of sitting around the table with my sons, their significant others, and hopefully their children. I want…

For most of my 56 years, I’ve felt isolated from the hemophilia community. Before the internet — yes, youngsters, there was such a time — I had very little education about my bleeding disorders and no idea what to expect. I felt no sense of community. Hemophilia didn’t run in…

There was a time when I couldn’t make plans because hemophilia was the center of my life. Vacations were dreams, family outings were few and far between, and the mundane happenings of everyday life were nonexistent. There was no sense of complacency. Every waking moment was consumed with the…

Diabetes, which causes blood sugar levels to rise too high, is less likely to develop in young men with hemophilia than in the general male population, a U.S. study found. However, the risk of diabetes rose in older patients and in those who tested positive for hepatitis C (HCV),…

Hemophilia B patients living in urban mainland China have longer hospitalizations and significantly higher medical costs — including more expensive fees for coagulation factors concentrates — compared with patients with hemophilia A, a retrospective study shows. In fact, people with hemophilia B had inpatient medical costs more than…

The vast majority of women who have a bleeding disorder or are hemophilia carriers experience noticeable symptoms, such as bruising or heavy periods, a study based on survey results reported. These women also often mentioned encountering healthcare professionals who were dismissive or lacking in empathy. “Many of the experiences…

Instead of Powerball, I have won the rare bleeding disorder lottery. I have von Willebrand disease and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. My diagnoses are rare within a rare community. I often feel like a…

My Facebook friends fall into a few categories: biological family, colleagues and friends from my music and teaching days, high school and college friends and teachers, and my “bleedin’ folk” family. Raising two sons with severe hemophilia is a blessing because of the people in my life (I work…

I recently attended a webinar called “Impact of Factor 8 on Bone Mineralization,” sponsored by Factor My Way, a patient support program. It featured Claudio Sandoval, MD, who has over 30 years of experience treating people with bleeding disorders and is passionate about bone health, an often overlooked aspect of…