I taught choral music in a few local school districts in the Houston metropolitan area in a former life. One year, a friend of mine in the bleeding disorders community asked if I had a group that could provide entertainment at the hemophilia Christmas party. I told her…
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Immunizations are sometimes tricky when a child has a bleeding disorder. The shots can cause bruising and swelling at the injection site, or even a muscle bleed. Each person is different, but nevertheless, precautions must be taken. When my children needed immunizations, I always gave them a dose of…
Splash! A kid’s plastic drinking cup falls to the floor, spilling water all over. “Oh, no!” a toddler exclaims, noticing the accident. She picks up a rag and runs it over the wet spot on the ground. “Wipe,” she says. This is a common scenario in our house these days now…
When administered at the highest dose, the investigational gene therapy SB-525 (giroctocogene fitelparvovec) prevented bleeds and the use of clotting factor VIII (FVIII) in men with severe hemophilia A, according to follow-up data from the Alta Phase 1/2 clinical trial. All five men given the highest dose…
With all of the talk about COVID-19 vaccinations being right around the corner, I cannot help but feel like I can finally breathe. Hopefully, at this time next year the world will look back on the year past and proclaim, “We are free at last!” Life may return to normal,…
Two potential gene therapies — AMT-060 and AMT-061 (etranacogene dezaparvovec) — lead to safe and long-term increases in factor IX (FIX) activity, as well as fewer bleeds among patients with hemophilia B, according to the therapies’ maker, uniQure. The company announced in a press release that…
The coronavirus is turning lives upside down. A good friend recently tested positive, and when they told me, I was uncertain about how to respond. Should I say I’m sorry? That they will be OK? Not to worry? Knowing what to say isn’t easy. It reminds me of when…
Navigating the holidays can be taxing, even in the best of times, even in the best of families. Navigating the holidays with a bleeding disorder adds to the holiday challenge. Navigating the holidays with a bleeding disorder during a global pandemic? Well, that may be a bit…
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Finding Contentment in Change
Want to be happier and more content in life? Embrace change, a study published in The Review of Economic Studies notes. I did a double take when I first read about the study at cnbc.com. Oftentimes, change and contentment are presented as completely opposing ideas. The stereotypically “content”…
It started the fall of my daughter’s sixth-grade year in school. While I had listened to DJ Elliot Segal of the radio talk show “Elliot in the Morning” for nearly 20 years by then, I’d done so mostly solo. My husband found no value in the show, and I…