I’ve been writing about life with my husband, Jared, who has severe hemophilia B and epilepsy, for many years now. In doing so, I’d often refer to myself as a caregiver in passing. But here’s something that might surprise you: This column is the first time I’m openly…
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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,…
The U.K.’s Medicines and Healthcare products Regulatory Agency (MHRA) has approved Hympavzi (marstacimab) for the prevention of bleeding episodes in people with both hemophilia A and hemophilia B, ages 12 and older. The therapy, already approved in the U.S. and the European Union, is designed to…
As I sat in my office chair working on bills and other household needs this past Saturday afternoon, my youngest son, Caeleb, approached me and asked if we could talk for a few minutes. His mannerisms told me he needed to share something dire, so I stopped typing, turned to…
As I transition to a new job in a new city, I’m meeting new colleagues at work. In these early days of getting to know everyone, I share only what I’m asked. I’ll share more of my story in time, especially since joining a team requires trust and acceptance, but…
Becoming educated and informed about hemophilia is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your hemophilia journey.
There is no cure for hemophilia yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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