Last year, I met Kayla Mack through a Facebook group for people with von Willebrand disease (VWD). Kayla has type 3, a severe form of the condition. She reached out to the group for help after a terrifying visit to the emergency room. She wrote, “I’m getting very afraid…

Special days come up: holidays, birthdays, and vacations. We take time to relax and enjoy ourselves, but there is always something staring us in the face. Needles do not care what days may be essential or ordinary. They call to our families, reminding us that hemophilia does not…

Hemophilia patients who received intensive factor VIII (FVIII) replacement therapy for better joint health were nearly five times more likely to see a reduction or complete resolution of synovial hypertrophy — swelling and thickening of the connective tissue that lines the inside of a joint — compared with those…

This summer brings a tinge of melancholy as the Sangre de Oro Chapter of the National Hemophilia Foundation has announced that its usual weeklong summer camp will not meet in person. While I understand the reason for avoiding unnecessary health risks, I still feel sad for the regular…

People with hemophilia experience prolonged bleeding, even from minor injuries, and may also experience spontaneous bleeding into joints, muscles, and other organs. These bleeds can cause pain, joint damage, and other complications, making pain management an essential aspect of hemophilia care. To alleviate intermittent pain, I employ…

I never used to think about aging because I was too focused on surviving the present: heavy periods, chronic anemia, and endless insurance hurdles. But lately, I’ve started to feel the shift. My joints take longer to recover. Mornings come with stiffness. Even the swelling from a minor finger bleed…

The U.S. Food and Drug Administration (FDA) has approved Labcorp’s companion diagnostic test for detecting preexisting antibodies against the viral carrier that’s used in Beqvez (fidanacogene elaparvovec-dzkt), Pfizer’s recently approved gene therapy for hemophilia B. A negative result on an FDA-cleared test is needed to be eligible…

On April 1, the U.S. Department of Health and Human Services (HHS) announced a restructuring that effectively eliminated the Division of Blood Disorders and Public Health Genomics at the Centers for Disease Control and Prevention (CDC). For many, this news went unnoticed. But for those of us in the…

Welcome to my world, where it seems like I’m perpetually hosting a pity party. The past year has thrown more curveballs my way than I’d ever anticipated, leaving me caught in a never-ending hurricane of challenges. While I’m sharing my struggles here, I’m also keeping in mind the resilience of…

When people find out my sons have hemophilia, their reactions often make me uncomfortable. “You are so brave, Cazandra,” one might say. “I don’t know if I could do it,” another might add. Friends and family members often place me on a pedestal by saying that my strength and courage…