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’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…

Cell therapies may be a feasible way of achieving a long-term correction of bleeding disorders, preclinical data shared by Sigilon Therapeutics show. A single implant of Sigilon’s engineered cells given to mice enabled durable production of therapeutic levels of blood clotting factors and normalized bleeding time. The technology uses the…

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…

One issue that faces many families with chronic illnesses is lengthy hospitalizations. The entire household is affected by the disruption in schedule and routine. Life changes drastically for everyone involved. The child in the hospital must spend precious time away from regular activities and friends. Social interaction moves from…

I’m happy to finally be an official member of the Father’s Day club. I’ve learned much from the way my own family raised me. It’s an uphill battle raising our daughter Cittie with the occasional bleed dragging me down. But seeing her mature so quickly…

Twenty-three years ago, my life changed dramatically. I became a mom. My firstborn, Julian, entered the world screaming at the top of his lungs with a head full of crazy black hair. I imagined him thinking, “Put me back in!” When he was laid on my chest, I was overcome…