My younger son, Caeleb, struggled to get to his feet and go to physical therapy today. His right ankle has very little cartilage because of hemophilia complications, and he often struggles to get around without the assistance of a cane or walker. He looked at me and…

It’s hard to believe, but my youngest son, Caeleb, will graduate high school in just a few months. I think back over the past 18 years of his life and stand in awe regarding the difficulties he’s faced while living with hemophilia. In his elementary school years, he struggled…

Women with hemophilia and other bleeding disorders are more likely to experience postpartum hemorrhage and other bleeding problems related to pregnancy and childbirth than those without such diseases, a population-based study from Canada reports. Findings “showed that women with inherited bleeding disorders are at increased odds of [postpartum hemorrhage]…

A person like me, with bleeding disorders like hemophilia and von Willebrand disease, can incur staggering expenses. The cost of medications alone can soar into the thousands of dollars per dose, and multiple doses are frequently required to manage bleeding episodes effectively. In 2019, I faced the…

Over seven years of follow-up, a single dose of Roctavian (valoctocogene roxaparvovec-rvox) sustainably reduced the yearly bleeding rate in adults with severe hemophilia A by up to 96%. That’s according to an update on a Phase 1/2 clinical trial (NCT02576795), launched in the U.K. in 2015, that’s…

When my youngest son, Caeleb, was 8 years old, our family went on a trip that required him to use a wheelchair at the airport. His severe hemophilia A with an inhibitor had caused persistent joint bleeds, which resulted in significant pain and limited mobility, as well as…

Loneliness in marriage is a controversial subject, and one often discussed in a negative light. But in my marriage to my husband, Jared, who has severe hemophilia B and a seizure disorder, it’s a feeling that often creeps in whenever he’s stuck in bed due to a severe bleeding…

The development of neutralizing antibodies, or inhibitors, against the clotting factor in replacement therapies administered to people with hemophilia may depend on the type of product used, a recent study has found. In previously untreated people with severe hemophilia A, or those who lack…

Tampa General Hospital’s cancer institute is the first healthcare center in Florida, and the third in the U.S., to successfully administer the first and only hemophilia B gene therapy, Hemgenix (etranacogene dezaparvovec), to a patient. “The infusion of this therapy is a hallmark of the TGH Cancer Institute’s…

Last year, at the Hemophilia Federation of America‘s Mild Matters Summit in Oklahoma, I attended a session led by physical therapist Nancy Durben that left a lasting impact. Durben guided a group on a leisurely walk, urging us to savor the experience — to relish the sound…