A new analysis of two Phase 3 clinical trials confirms that extending preventive treatment with Alprolix is safe and leads to markedly decreases in bleeding episodes of severe hemophilia B patients. The results were recently presented at the 59th Annual Meeting of the American Society of Hematology (ASH) 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…

A few years ago, I went to a tattoo convention. Before I could enter, I was required to sign a liability release. The form said that people with bleeding disorders (and a long list of other conditions) should not get tattoos. Needless to say, I am not always a…

I am not neurotypical. My thoughts, perception, and speech can be different than others. It is subtle, but there. For example, if someone tells me something, I take their word literally — and I mean literally. If someone tells me they poked themselves 30…

I don’t recall when I met Debbie Murray, but I remember the impression she left on me. Her frustration with the long and challenging journey to a proper diagnosis and effective treatment of her hemophilia was unmistakable. Debbie, 56, resides in Norwood, a village in the northernmost part of…

Heart disease is the No. 1 killer of women. Yet all of the studies I found on hemophilia and heart disease have studied only men. But essential lessons for women are in these studies, too. Today, National Wear Red Day, which symbolizes support for women’s heart health,…

I first met Kim Phelan, chief operating officer of The Coalition for Hemophilia B, in person at a recent symposium in Dallas. From the moment we spoke, I was in awe of her. Despite the hundreds of attendees, she took the time to engage with me personally.

Precision BioLogic has developed what it says is a better way of detecting levels of substances in hemophilia A patients’ blood that prevent clotting factor therapies from working as well as they should. It collaborated with Roche and Genentech in creating a kit it says can detect levels of the…

Several years ago, I spoke at a great bleeding disorders conference in California. Around 300 people attended, and we all had wonderful interactions. The attendees engaged with one another and found hope in their shared experiences. I left the conference energized and proud to be part of such a…

A recent study found that people with hemophilia who report better mental health may be more likely to adhere to their prophylactic treatment. It’s a compelling idea — that mental well-being can influence how consistently someone follows a care plan. But as I read through it, I couldn’t…