There have been many moments in my life when I’ve blatantly thought, “If I die bleeding, I die bleeding.” Of course, I didn’t want to think that, but I felt like I had no other choice. When doctors brush off your bleeding, when you’re told, “You’re “just anemic,” when…
Columns
When my youngest son, Caeleb, was born over 19 years ago, my wife and I found out that he had hemophilia before leaving the hospital. Devastated, we could not begin to tell anyone how we felt about the diagnosis. I remembered our struggles raising my oldest son, Julian, now…
What do developmental disabilities, French bread, endometriosis, nutrition, English tourism, and bleeding disorders have in common? They all claim March — or a select day or week during the month — for awareness. Organizations dedicate this time to educating the public through local and national gatherings and social media campaigns.
“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…
Beyond medical complexities, bleeding disorders illuminate inspiring stories of resilience, courage, and community strength. When we openly share our experiences, we educate others, combat stigma, and promote inclusion. Bleeding Disorders Awareness Month in March is an essential opportunity to highlight the realities faced by those living with hemophilia,…
It’s no secret that I love musicals. My greatest joy is finding phrases from a show’s libretto that speak to my soul. One such event happened when I saw the musical “Wicked” on Broadway. Toward the end of the show, witches Glinda and Elphaba sing a moving ballad in…
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…
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…
Recent Posts
- As my son stays busy chasing his dreams, pride and sadness mingle
- In sharing our rare disease stories, our collective light shines brighter
- New test may help fine tune care for those with acquired hemophilia A
- Mild hemophilia patients should monitor their clotting risk after surgery
- Rethinking care expectations in an adult partnership