Julian MacDonald opens up about life with severe hemophilia A, from early diagnosis to the financial and insurance challenges he faced in adulthood. He shares how leaning on pharmacists, care teams, and the broader hemophilia community became essential to understanding he didn’t have…
When people hear the word “hemophilia,” they usually picture bleeds, factor infusions and other treatment routines, and trips to the hospital. Those things certainly shape the condition, but they’re not the whole story. Over the years, I’ve noticed something that feels harder to explain, yet…
A newborn in China was diagnosed with hemophilia B after a ruptured liver caused significant abdominal bleeding, according to a case report. Due to early detection, timely surgical repair, and immediate factor-replacement therapy, the infant made a full recovery. This case shows that “neonatal hepatic rupture may be…
For most people, taekwondo is about discipline, confidence, and the long path toward a black belt. For Tara Blakely, it became something else entirely — a story of interruptions, detours, motherhood, misdiagnosed bleeding, and the quiet strength required to begin again when life keeps pulling you away. Tara began her…
Aging can affect mobility and lead to a series of complications for people with hemophilia, including increasing the risk of joint bleeds and irreversible joint damage. Regular exercise and physical therapy can be an important part of maintaining your strength, protecting your joints, and managing hemophilia’s impact on…
While hemophilia A and hemophilia B are both bleeding disorders characterized by deficiencies in blood clotting factors, there are differences in one type versus the other, particularly in the specific genetic mutations that cause the disease, and in some of the treatment methods.
A 32-year-old man was diagnosed with hemophilia A after a minor injury caused disproportionate right eye bleeding, with a buildup of pressure inside the eye and vision loss, a new U.S. case study reports. According to the researchers, this case demonstrates that an eye bleed can be a rare…
Beqvez (fidanacogene elaparvovec-dzkt), a discontinued gene therapy for hemophilia B, was shown to help reduce joint bleeding in Phase 3 clinical testing. That’s according to new analysis results from an ongoing global study that assessed the treatment’s effectiveness and found positive results. Specifically, “through 15 months, 12 of…
For years, writing about women with hemophilia and other bleeding disorders has meant telling stories of delayed diagnoses, silent pain, and lives shaped by the absence of care. In many ways, it still does. But lately, I think something has shifted. The change has been gradual, and I don’t…
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