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My design prototype for a jewelry piece commemorating hemophilia just rolled off the manufacturing line. The Hemo Ring will be posted on our Instagram store soon, just in time for March, which is Bleeding Disorders Awareness Month. As the owner of a small jewelry business, I revel…

On Sunday mornings in my home, I usually watch “CBS Sunday Morning,” hosted by Jane Pauley. Last week, an interview caught my eye. The segment featured Dr. Jennifer Doudna, who won the Nobel Prize in chemistry in 2020 along with fellow researcher Emmanuelle Charpentier for developing…

When my youngest son, Caeleb, was in elementary school, my main objective was to get him to school every day and not receive a phone call from the nurse. That may not sound like an accomplishment, as most people send their children to school regularly without issue, but complications…

Grab the factor, syringes, butterfly needles, drapes, Band-Aids, self-adherent wrap, sharps container, and tourniquet! These things are usually what comes to mind when we think about hemophilia care. Medical supplies are the first thing we think of when we plan for day-to-day life with hemophilia. Preventing and treating bleeds…

When I was a child, I learned a song called “Greatest Love of All.” I’ve always found the first two lines particularly striking: “I believe the children are our future/ Teach them well and let them lead the way.” Now that I am a mom to my very own spunky…

Back in Texas in good ol’ 1996, when my first son came into the world, a nice, well put-together doctor entered our room. He introduced himself as Dr. Connelly, the pediatrician on call. He appeared very polite and had an effortless bedside manner. He let us know that our…

My adult son, Julian, does a wonderful job managing his hemophilia. He infuses twice a week per doctor’s orders, and if he has a breakthrough bleed, he treats as needed. Julian is extremely fortunate, because throughout his 24 years, hemophilia has not been the center of his life. His journey…

It just slipped out that one time. I wasn’t even thinking. My husband, Jared, and I had been talking casually about how some of his friends had taken up cycling, when I made the offhand comment that he might be able to do the same. After all, I said, other…

At every annual event sponsored by the National Hemophilia Foundation, a particular room is dedicated to remembering those who died from complications of hemophilia. In the 1980s and early ’90s, many people lost loved ones during a period that became known as the “hemophilia holocaust.” A staggering number…

Most people probably have a handful of good stories to tell at parties, but someone with a rare medical condition never is at a loss for a new tale to tell. I recently led a workshop to help people in the bleeding disorders community craft their “elevator pitches,” which…