Columns

A few days ago, I gave my husband, Jared, a factor IX infusion for a back bleed. It wasn’t so bad that he couldn’t move around, but in his words, it felt “annoying.” He was already suspicious about it the night before, but he decided to wait it out,…

Last week, I did something I never dreamed I would do: I taught “MacDonald the Younger” how to ride a bike. At 13, he is considered a senior statesman in our neighborhood. Other children learn at age 5 or 6 how to balance on two wheels and head down the…

When your children move into adulthood, managing their bleeding disorder becomes their responsibility. I have worked hard to prepare my adult son. He says “adulting” is not fun. I laugh and tell him that he’s joined the club. He has ordered his own factor since middle school, but I…

I am not merely a carrier of hemophilia. I am certainly not an asymptomatic carrier of hemophilia. I am not even a symptomatic carrier of hemophilia. I am a woman…

I’ve recently taken to collecting pearls. It started as a stock-obtaining activity for the jewelry business I run with my husband, Jared, who has hemophilia. It has since grown into a full-fledged personal obsession. This means I’ve been making a lot of sentimental purchases, but I have absolutely no regrets.

About this time every summer, my social media feeds begin to fill with lots of smiling faces from hemophilia camps across the country. Photos showing kids pursuing myriad activities — from fishing to wall climbing to crafting — share a common theme. They are fun, relaxed kiddos doing what…

When my son “MacDonald the Older” took over his care, I celebrated his accomplishment. “MacDonald the Younger” would not reach independence until many years after his older brother did, but reducing oversight of infusing to one child proved liberating. Before the Younger’s independence, my wife and I still actively participated…

Severe, moderate, and mild: These are the degrees with which a person with hemophilia is labeled based on the percentage of clotting factor in their blood. With the word “severe,” one might automatically think it is the worst kind of hemophilia. This level means that a person has less…

Over the past few years, I have had the pleasure of connecting with many women who are diagnosed with hemophilia A, hemophilia B, or as symptomatic carriers. These women have so many stories to share. The thread of commonality in their journeys is their struggle…

When I was a kid in the 1970s and ’80s, I thought children who had trampolines in their yards were amazing. Being invited over to jump on a friend’s trampoline was a special treat. Later, as a teacher, I lost track of how many of my students acquired injuries from…