I was over the moon when my first son, Julian, was born in 1996. My baby was here, and life would never be the same. When Julian wouldn’t stop bleeding after his circumcision, the pediatrician was visibly shaken. Seeing a doctor with furrowed eyebrows is disconcerting. The next day,…

More opioids were prescribed to treat pain in adults and children with hemophilia than was reported in U.S. national datasets, a new study shows. As such use carries a risk for opioid‐related complications, hemophilia treatment centers (HTC) need to take a more active role in pain management…

Hemophilia A patients age 12 and older who live in Canada now may receive prophylactic (preventive) treatment with Bayer’s antihemophilic factor Jivi. Health Canada approved Jivi as a treatment to prevent or reduce the frequency of bleeding episodes in patients age 12 or older who have received…

One of the stranger skills I’ve developed in my marriage to someone with hemophilia isn’t medical — it’s domestic. It’s the art of removing blood stains. To be fair, I already had some experience dealing with blood simply by being a female person who menstruates. But when you’re married…

Hemophilia is a lifelong condition, both for my husband, Jared, and me. He’s had hemophilia B since he was born, and until a cure is found, it’s here to stay. While I don’t have hemophilia, we both must live with it. I imagine hemophilia to be like a…

The Spanish Interministerial Commission on the Pricing of Medicines, known as CIPM, has issued a positive recommendation for national reimbursement of Hemgenix (etranacogene dezaparvovec) for eligible people with hemophilia B, according to CSL Behring, the company that markets the gene therapy. The recommendation means that patients in Spain should…

We received some unexpected news this week from the University of New Mexico, where our youngest son, Caeleb, is a rising sophomore. Although we had thought he’d be able to move into a dormitory on campus this fall, it appears he’s still on a waiting list, and the chances…

Researchers at the Mayo Clinic Arizona have reported a third rare case of hemophilic pseudotumor (HP) identified in a non-hemophiliac patient. Findings from the investigation, “Hemophilic pseudotumor in a non-hemophilic patient treated with a hybrid procedure of preoperative embolization of the feeding arteries followed by surgical resection—A…

I’ve never met a parent who enjoys the school drop-off. It’s frustrating when someone doesn’t follow protocol and stops without moving their vehicle to the front of the drop-off zone, thereby forcing everyone behind them to wait. And in my experience, the line forms at least half an hour before…

A single dose of the investigational gene therapy FLT180a can lead to clinically meaningful, sustained increases in the activity of factor IX (FIX), effectively preventing bleeds and the need for replacement therapies in people with severe hemophilia B, a Phase 1/2 clinical trial shows. These results support the…