Most women of childbearing age have normal monthly periods. For women like me with bleeding disorders, monthly periods are a “shark week event” with horrific bleeding and pain. The pain made me sweat, shake, and vomit. The severe bleeding had other consequences: I was iron-deficient, anemic, and exhausted. After work,…

Despite the challenges associated with holding a large conference online, the National Hemophilia Foundation did a fantastic job at this year’s Bleeding Disorders Conference by virtually presenting participants with essential information about treatments and future methods of living with bleeding disorders. Nothing will replace great friends getting together…

The first of my four alarms sounds at 6 a.m. Groggy, I roll over to turn it off, knowing I have 15 minutes until the next one goes off. I am a night owl and often let time slip away, crawling into bed after midnight. The next morning, I pay…

I consider myself a high-functioning adult. Living with depression, anxiety, and chronic pain brings quite a few challenges, yet I manage to keep moving. Add my son Caeleb’s bleeding disorder, and life can prove interesting. While managing our chronic conditions, I find that I rarely ask for…

I have begun the year on a high note: I can park both cars in my garage. My family pitched in to help with a clear out. We tossed things we no longer need and donated useful items. It was a fantastic feeling to get rid of the things that…

Online shopping is one of my guilty pleasures. In fact, as I write this column, I may have spent a significant fraction of the day swiping through hundreds of pages of items on my favorite shopping app. I don’t always end up ordering every item I find — I simply…

An ultrasound-mediated, non-viral gene therapy safely and effectively increased the levels of factor VIII (FVIII) — the missing clotting factor in hemophilia A — and lessened bleeding in a mouse model of the disease, a study shows. The delivery of a modified, improved version of the disease-associated F8 gene…

A single dose of the experimental gene therapy Roctavian (valoctocogene roxaparvovec) continues to prevent bleeds and the need for preventive treatment, or prophylaxis, over at least two years in men with severe hemophilia A, according to updated data from the Phase 3 GENEr8-1 trial. Notably, the activity of…

Preparing for major spinal surgery has me feeling more than the usual pre-op jitters. There’s something more profound at work — a feeling that connects me to the years of watching my son Caeleb endure numerous surgeries as a result of complications from severe hemophilia with an inhibitor. Because…

Navigating social media for information about hemophilia and other health issues can produce mixed results, but amid the noise are shining beacons of knowledge and support. In honor of Bleeding Disorders Awareness Month, which is now coming to an end, the following are five exceptional social media accounts…