When you live with a chronic illness, it is easy to feel alone. You can get mired in the daily struggle of caring for your loved one, or yourself, and it can quickly become overwhelming. There are days, and even weeks, when life with your illness is manageable,…
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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…
After the Gold Medal … Now What?
The Olympic medal ceremonies are some of my favorite moments as a spectator. Seeing the athletes with their hands over their hearts as the flag is raised and the national anthem is played is a beautiful sight. With their medals hanging proudly around their necks, one can see…
In my Oct. 4 column, I reflected on the devastation Hurricane Helene had inflicted on my community in Punta Gorda, Florida. I never imagined that just weeks later, I’d be writing about a second hurricane — Milton — that would prove even more destructive to my town than Helene.
An internal investigation conducted by Ferring Pharmaceuticals into its recently recalled desmopressin nasal spray formulations found an issue with the tightness of the bottle seal. Measures taken to prevent recurrence of the issue will affect the availability of the products through at least 2023.
Recently, I was browsing the website of the National Hemophilia Foundation and came across a series of videos encouraging people with hemophilia to have regular testing for inhibitors. As I watched the videos, it occurred to me that women with hemophilia don’t talk much about inhibitors.
My youngest son, Caeleb, is a sophomore in high school. Being with his marching band “people” makes him very happy. Caeleb plays the trumpet, but he also plays the synthesizer in the percussion pit (which performs from the sideline) during marching season. I am grateful for the band director’s…
Note: This column describes the author’s own experiences with getting three vaccines at once. Not everyone will have the same response to treatment. I consider myself quite adept at managing my bleeding disorders, von Willebrand disease and hemophilia B. Decades of experience have taught me how to…
January is supposed to feel like a reset — a clean slate and a fresh start. But for people with bleeding disorders, it often feels like the opposite. Prior authorizations expire. Deductibles reset. Insurance coverage shifts. Nothing about my medical reality changes, but suddenly, everything about access to care feels…
Soon, I’ll leave sunny Florida for the northern tundra of Madison, Wisconsin, and Schaumburg, Illinois, to be with my family for Christmas. As I prepare to spend time with my loved ones, I can’t help but appreciate the significance of this trip: It marks my first Christmas journey without…