When I was 3 years old, I joined a television pageant for little girls called “Princess Asia.” I won the top prize. But when I look back on that moment now, the crown itself feels almost incidental. What stands out more is that I caught amebiasis, an intestinal infection, just…
Columns
Second in a series. Read part one. In my last column, hemophilia awareness advocate Lee Hall shared memories of a childhood shaped by hospital stays, difficult infusions, and the early days of hemophilia treatment. For many readers, those experiences may already feel unimaginable compared with the care…
A week ago, my oldest son, Julian, left home to begin rehearsals for a musical that could open doors to a long-term career. The show is a parody of the slasher movie “Saw.” Its producers hope to have him rehearse for a few weeks in San Antonio before sending him…
I’ve lived in New Mexico for 20 years, but I only recently visited the Loretto Chapel in Santa Fe. The chapel is known for its spiral staircase, built in 1878 with wooden pegs only, no nails. The staircase rises 22 feet to the choir loft without any central support.
I had a lot to learn about hemophilia when I attended my first retreat for women with bleeding disorders in 2017. Some of the attendees were comparing their levels of clotting factor VIII (FVIII), the protein that’s deficient in hemophilia A, when I was shocked to learn mine were the lowest…
Hemophilia doesn’t just alter bodies and routines. Over time, it can also quietly shape expectations about who leads, who manages risk, and who carries responsibility. These expectations are rarely spoken out loud, but they’re powerful enough to follow people into adulthood, partnerships, and marriage. What complicates things is that…
First in a series. Some people in the bleeding disorders community seem like they’re larger than life — not because they seek attention, but because their lives intersect with so many pivotal moments in our shared history. Lee Hall is one of those people. I know Hall through his advocacy…
Second in a series. Read part one. Both of my sons were diagnosed with severe hemophilia A a few days after they were born. But that’s where their similarities end. As I shared last week, things went smoothly after we switched to a more flexible way of caring…
Whenever I’m on social media, I find myself questioning everything. Is that picture real or made by AI? Is this headline accurate? Are these videos genuine? I mostly stick to following family and friends, though I do enjoy dog videos. When it comes to messages from strangers, I’m pretty cautious.
Hemophilia is sometimes a surprise in families. Research shows that approximately 30% of cases of hemophilia A and BÂ are sporadic, meaning there’s no known family history. “This happens when a new alteration in the F8 or F9 gene occurs by chance in an egg cell or…
