Older men with hemophilia report higher rates of anxiety, depression, and diabetes compared with the general U.S. population, a recent study reported. However, rates of heart-related health problems, such as myocardial infarction (heart attack) and coronary heart disease, were lower in hemophilia patients than in the general population. The…
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My husband, Jared, has been performing his factor infusions for his hemophilia B for over three years now. In that span of time, he’s learned so much — not just about veins, syringes, and technique, but also about his body and his limits. Infusing factor IX has become…
Don’t Minimize Your Story!
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,…
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.
coreHEM Results Lead to Joint Effort to Create Tool for Assessing Mental Health in Gene Therapy
A publicly available, patient-reported outcome measure is being jointly developed by Green Park Collaborative (GPC) and the National Hemophilia Foundation (NHF) to evaluate the effect of gene therapy on the mental health outlook of people with hemophilia type A and type B. The collaboration follows work…
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…