Caeleb, the child doctors said I’d never have, has changed my life. He is 16 and thinking about his future. That may sound like a normal thing for a 16-year-old, but I was unsure about his future with his hemophilia A. His life with this disease has been…
Columns
A simple tonsillectomy led to my eventual diagnosis of hemophilia B and von Willebrand disease. Without a family history, a bleeding disorder wasn’t on my family’s or pediatrician’s radar. I had to almost bleed to death for a bleeding disorder to be suspected. Terror of the tonsils The…
Many times when my sons were younger, I found myself overwhelmed by the constant demands of their bleeding disorder and felt that I had nothing else to give. The needle on my gas gauge was below empty. I felt as if I’d used every ounce of energy and couldn’t…
Spring is in the air. With flowers blooming and birds chirping, this time of year is filled with new life and new beginnings. It’s also graduation season, a time that brings hope. Families share loved ones’ accomplishments and celebrate the end of one season and the beginning of the next.
When I was younger, my family moved around a lot. I also spent a lot of time traveling all over the Philippines with my mom, due to her government job. I especially loved going to the beach, whether to swim or just listen to the soothing sound of the waves…
What happens when a symptomatic hemophilia carrier needs minor surgery? Will her increased risk of bleeding be recognized? The story of Kim H. came to my attention on Facebook. She is 39 years old and lives in Pennsylvania. I recently interviewed Kim over Zoom, as her story is important.
One of the unexpected issues I struggled with when my youngest son, Caeleb, faced many prolonged hospital stays due to internal bleeding episodes was loneliness. My wife, Cazandra, and I divided our time between the hospital and home life with our older son, Julian. As a result, we…
My husband, Jared, and I have maintained a small garden on our balcony ever since we moved into our new home. We started out with just a few potted herbs, and as time went by, we expanded our collection to include some ornamental plants and flowers. Jared is a wizard…
It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a bleeding disorder. But the psychological and emotional damage that may result is not as easy to see or treat. A U.S. survey of hemophilia patients, published a few years…
I love the final-night event of a national bleeding disorder conference. Different groups invite community members to play games, the meal is remarkable, and the dance floor begs for us all to gather and celebrate. After the highly informative events offered by leaders in the bleeding disorder community, friends…
Recent Posts
- Why progress in von Willebrand disease treatment finally feels real
- Global survey finds many women with hemophilia face diagnostic gaps
- Learning how to infuse factor gave my family freedom, part 1
- Guest Voice: My sons with hemophilia are blessings after a devastating loss
- Love shows up to navigate hemophilia, distance, and family bonds