Organizations such as the Hemophilia Federation of America and the National Hemophilia Foundation provide the bleeding disorder community with a wide array of resources, support, and platforms to connect with others. The National Hemophilia Foundation held its annual meeting recently, and I watched as friends in the…

There’s one thing I want more than anything: When my sons are grown with their own families, I want them to come home for Thanksgiving (without my having to beg). I dream of sitting around the table with my sons, their significant others, and hopefully their children. I want…

There was a time when hemophilia ruled my family’s every waking moment. My husband and I set out to accomplish two goals each day: going to work and taking care of our youngest son, Caeleb. It was nice when Caeleb could go to school for an entire day, but…

There was a time when I couldn’t make plans because hemophilia was the center of my life. Vacations were dreams, family outings were few and far between, and the mundane happenings of everyday life were nonexistent. There was no sense of complacency. Every waking moment was consumed with the…

A columnist reflects on how a lifelong friendship taught her the value of “meeting halfway,” a lesson that later guided her advocacy while raising a son with severe hemophilia. When gaps in care emerged, collaboration and persistence became essential to securing the support he needed.

Every family member has a role. Parents usually assume the roles of providers and nurturers, making sure their children have a roof over their heads, food to eat, and plenty of love. Siblings each bring their unique personalities to the home. Some are playful and fun-loving, while others may be…

Last week, I was on Facebook and a post I had been dreaming about appeared on my timeline. The U.S. Food and Drug Administration has approved a new therapy, Hemlibra (emicizumab-kxwh), for patients with hemophilia A and inhibitors. It’s the first new medicine for inhibitors in almost…

The 1980s were my favorite decade. I was in high school, and my music was the most important thing in my life. I practiced hard for auditions in the hopes of making the Texas All-State Band. Life was good. My perception of that decade changed after my first…

I get many opportunities to travel across the country to speak with families affected by bleeding disorders. Everywhere I go, I see familiar faces — faces that bring me great joy. There are lots of hugs, and each smile warms my heart. My talks change from event to…

Two likes. No comments. Just. Two. Likes. A friend, who has a son with hemophilia, told me about her daughter’s new diagnosis unrelated to bleeding disorders. She was scared and unsure of what to expect for her daughter, and as an experienced “hemo mom,” she immediately found a…