People often assume that loving someone with hemophilia — and in my husband’s case, epilepsy, too — must come with endless patience, unshakable optimism, and the kind of soft, gentle pity we reserve for those we imagine can’t carry their own weight. But mine is a different kind of…
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People with hemophilia have significantly higher rates of depression, anxiety, stress, and overall mental distress than healthy individuals, with physical symptoms playing a role, a study in Germany found. These include “pain-related parameters, but also manifested arthropathy [joint disease] and the presence of viral infections,” the researchers wrote, which…
My oldest son, Julian, was 10 years old, when we first saw the musical “Wicked” onstage. Our family’s love for live theater is a bond we cherish. As we watched and listened, I heard a lyric that made me shudder: “Unlimited. My future…
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…
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…
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…
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…