I’ve always had a hard time handling disappointment. I grew up labeled a high achiever and was accustomed to meeting high expectations. I feared disappointing other people, or feeling that my best efforts just weren’t enough. As a result, I became sensitive to disappointment, rejection, and failure — a fearsome…

Adults with moderate-to-severe hemophilia engage in less physical activity and have reduced physical fitness relative to healthy adults, according to a recent study. Data also indicated these patients had more indicators of abdominal fat accumulation and more often had high blood pressure than healthy people, which could overall reflect…

My husband, Jared, had a knee bleed last week. The moment he felt the familiar twinge in his joint, he performed his usual treatment regimen: a factor infusion and bed rest. We thought we’d simply wait it out without doing anything special besides resting the injury…

I have von Willebrand disease (VWD) and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. Hemophilia is often thought of as a condition that only affects men, but women can and do have it, too.

Hurricane Ian, which battered the southeastern United States and the Caribbean in late September and early October, nearly destroyed the home of a client of mine. She compares the damage to a violent tornado combined with a devastating flood. Parts of her home were gutted. In the aftermath, she…

One-month treatment with Hemlibra (emicizumab) and an immunosuppressive medication were effective for patients with acquired hemophilia at rapidly controlling bleeding and reducing the use of other therapies, a single-center study shows. The researchers also noted that using less toxic immunosuppressive agents such as rituximab was effective at blocking…

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…

Greetings! I’m writing from Orlando, Florida, my temporary oasis from the wrath of Hurricane Ian. Last week, my mom and I evacuated to this inland city from Punta Gorda, on the coast in the southwest part of the state. Staying was not an option as my mom is oxygen-dependent…

Well, hello, Ian. Please go away. As I write this, the track of Hurricane Ian has shifted south from Tampa, Florida, and toward my home in Punta Gorda. Not my first time at this rodeo. In 2004, Hurricane Charley, which was Category 4, devastated my hometown. But this…

This morning I walked with my youngest son, Caeleb, into his school. He depended on a walker to help relieve the pain he felt in his right ankle and knee. The ravages of multiple internal bleeding episodes have left my son with tremendous pain. His ability to walk…