A voice memo appeared in a text from one of my hemophilia mom friends. We usually see each other at national meetings or on social media, but we don’t talk much outside of that. She’s one of the coolest women I know, so I always wonder why we don’t…
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Part two in a series. Read part one. My family was taught many lessons in the year that everything appeared to fall apart and hemophilia became a nightmare in our lives. The most significant lesson was to cherish every moment. Sometimes in life’s most significant challenges,…
Lately, I’ve been toying with the idea of starting a social media channel that captures slices of my everyday life. On the surface, that might not sound unusual. Plenty of people create online spaces to document what they love, what frustrates them, or what they’ve learned. But for me, the…
Friday is a big day. My husband and I will take Caeleb to the Hemophilia Treatment Center for bloodwork. If all looks well, we may discuss removing his port-a-cath. Not replaced. Removed. It’s not that his veins are fantastic, but Hemlibra (emicizumab-kxwh) is doing what it is supposed…
Summer vacation flies by so quickly! We start preparing for the new school year by shopping for new clothes, school supplies, and shoes. However, prepping for school when your child has a bleeding disorder adds another aspect of preparedness to shoot for. Additional educational support for sports, childcare, or…
The Marvel Cinematic Universe is part of today’s culture. Its movies take theatergoers to places never imagined. Iron Man, Thor, and Doctor Strange are a few of the characters that it brings to life, and each seems incredibly realistic. When I watch these movies, I can’t help but…
The pandemic changed the world. From working in an office to working remotely, staying connected through technology, and shopping for necessities online, the world managed to keep moving. I’m grateful for the conveniences and adaptations that are now the norm, but I find there’s still an area where many are…
A committee of the European Medicines Agency (EMA) has issued a positive opinion recommending the one-time gene therapy etranacogene dezaparvovec be granted conditional marketing authorization to treat appropriate adults with hemophilia B. The recommendation from the EMA’s Committee for Medicinal Products for Human Use (CHMP) will now be…
Mother’s Day is this Sunday. The day dedicated to honoring mothers began in the early 1900s. It’s a special time of joy and celebration, with families going out for lunch and mothers receiving cards and flowers. That’s the picture-perfect version of what Mother’s Day looks like in a television…
Next year’s Hemophilia Federation of America’s (HFA) monthly educational series for patients, caregivers, and healthcare providers opens on Jan. 18 at 7 p.m. EST with a presentation about joint replacements for bleeding disorder patients. The speaker for the first of the 12 HFA webinars planned for 2022 is James…