“As a woman with hemophilia, what situations cause you anxiety?” a friend recently asked me. What a great question! I loved that she added “as a woman” because women with hemophilia can experience stressors that men with hemophilia don’t. Many anxiety-provoking circumstances affect men and women with hemophilia…
I’ve been a fan of collecting fountain pens since I was a teenager. As a writer, I’ve always believed that having the right tools — pens that glide effortlessly, inks that flow just right — makes the writing process more enjoyable. And for me, fountain pens have been…
Healthcare costs, particularly related to disease-specific medications, are especially high for people with hemophilia A or hemophilia B on preventive treatments and/or for those with inhibitors. That’s according to a study in France, which also found that patients have a significant clinical burden, with a higher risk of…
Last in a series. Read parts one and two. Guinea pigs are similar to humans. Their body chemistry has led to testing that’s revolutionized research, with the development of vaccines, replacement heart valves, and asthma medications, to name a few. The term “guinea pig” has become synonymous with…
It was a sunny, gorgeous day, and I was meeting a friend at one of the most beautiful places in California, where the Klamath River feeds into the Pacific Ocean. River otters and sea lions gather there to feed off salmon. Imagine our luck: The parking lot was open! We…
Beqvez (fidanacogene elaparvovec-dzkt) was a gene therapy that was approved in the U.S. for the treatment of certain adults with moderate to severe hemophilia B. The one-time therapy, given via an into-the-vein or intravenous infusion, was marketed by Pfizer, who made the decision to halt its development and commercialization.
While cleaning up recently, I found a physician-authored exercise guide from 2002 for Filipinos with hemophilia. It was fascinating to read, especially knowing that at the time, synthetic factor products were still scarce here in the Philippines. Treatment options were limited, and many people with hemophilia still relied…
The U.K.’s National Institute for Health and Care Excellence (NICE) has recommended Altuvoct (efanesoctocog alfa) be available through the National Health Service (NHS), England’s public healthcare system, as a treatment option to manage and prevent bleeds in people with severe hemophilia A, ages 2 and older. This decision…
Note: This column describes the author’s own experiences with surgical procedures. Not everyone will have the same response to these operations. Consult your doctor about the potential risks and benefits of any procedure you’re considering. As I get older, the thought of needing any kind of surgery scares the…
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