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How a new doctor made me feel safe as a woman with hemophilia
Forty-six. That’s how old I was when I finally accessed the hemophilia care that I’d needed my entire life. I believe the reason it took so long was that I’m a woman. It may seem crazy to those who aren’t familiar with the bleeding disorder. For years, the misconception…
The hidden value of living with hemophilia
My husband, Jared, and I both have marketing backgrounds. We’re used to thinking in terms of value. In branding, you ask: What makes this product worth noticing? What problem does it solve? Why should people care? It’s strange to apply that mindset to something like hemophilia. But when you…
Extended hemophilia half-life products aid care, but raise costs
Adults with hemophilia who switched from standard to extended half-life replacement treatment needed fewer infusions, had fewer bleeds per year, and adhered better to their treatment schedules, a Finnish study shows. Switching to extended half-life replacement treatment increased the mean yearly costs by nearly €19,000 (about $22,000) for…
What I’ve learned about obesity, joint pain, and hemophilia bleeds
It’s never easy to talk about weight. Like many people, my weight has wildly fluctuated throughout my adult life, sometimes by as much as 60 pounds or more. I’ve struggled to find a happy medium between healthy food choices and enjoying the occasional indulgence. I haven’t been in tip-top shape…
FVIII from advanced liver organoids stops bleeding in hemophilia A mice
Scientists have developed advanced liver organoids — lab-grown “mini-organs” that mimic the function of organs in the body — that are capable of growing their own functional blood vessels and producing clotting factors that could eventually be used to treat hemophilia, according to a study. In a mouse model…
Connection is vital for women in the hemophilia B community
A few weeks ago, I spent a long weekend at a women’s retreat hosted by the Coalition for Hemophilia B in Stone Mountain, Georgia. Years ago, I attended the iconic laser show at Stone Mountain and have always wanted to return. I was thrilled to find out the show was…
Patient in Germany gets hemophilia B gene therapy Hemgenix
The first hemophilia B patient in Germany has received the gene therapy Hemgenix (etranacogene dezaparvovec), according to CSL Behring, the therapy’s developer. “The treatment of the first patient in Germany with Hemgenix marks a milestone in hemophilia B therapy,” Christian Wieszner, managing director of CSL Behring Germany,…