Hemophilia and Me – a Column by Jennifer Lynne

Second in a series. Read part one. In part one of my interview with Chip Hailey, a 75-year-old from Tennessee, we explored what led him to pursue gene therapy for hemophilia B, his lifelong journey with the condition, his hopes for a new chapter, and the road to…

First in a series. Have you ever wondered what it’s really like to receive gene therapy? I know I have. So when I had the chance to interview 75-year-old Chip Hailey of Tennessee — one of the participants in a clinical trial for Hemgenix (etranacogene dezaparvovec), the first…

Recently, I attended the Florida Bleeding Disorders Association’s Women’s Educational Retreat in Hollywood, Florida. I came away with several important takeaways, but one presentation by Lucila Ramirez Donaldson of Genentech truly resonated: caregiver burnout. Many of the women attending were mothers or partners of people living with hemophilia. I’ve…

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…

I’ve lived with bleeding disorders all my life. I’ve infused at home, navigated emergency rooms, and advocated for better care for myself and others. But when I was invited to participate in a global hackathon on mental well-being in the hemophilia community, I was struck by something that often…

I was at the Coalition for Hemophilia B’s Annual Symposium this month in Orlando, Florida — surrounded by my community, sharing meals and meaningful conversations — when it happened. No bump. No injury. No accident. I was literally just standing in the elevator when I felt it: a sudden,…

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…

Over the weekend of April 4-6, I had the privilege of attending the National Outreach for von Willebrand (NOW) Conference in Phoenix. Hosted by Arizona Bleeding Disorders and sponsored by CSL Behring, the event brought together people affected by von Willebrand disease (VWD) from across the country to…

When I was diagnosed with hemophilia B and von Willebrand disease as a child, there were no choices in terms of treatment strategy. Treatment for me came in the form of intravenous blood products administered only in the hospital. Fast-forward to today, and I’m fortunate to have options…

It’s that time of year again when brackets are busted, Cinderella stories happen, and basketball fans everywhere are glued to the television for the madness of March. The NCAA basketball tournament is full of buzzer-beaters, heartbreak, and jaw-dropping comebacks. And oddly enough, for many of us living with bleeding disorders,…