Four years after treatment with the gene therapy Hemgenix (etranacogene dezaparvovec), most people with hemophilia B aren’t taking preventive therapies and annual bleeding rates remain substantially reduced, new data from the Phase 3 HOPE-B trial shows. CSL Behring, which markets Hemgenix, presented the results at the 18th…
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Significant disparities in access to hemophilia treatment exist around the world. In general, people with hemophilia can live a relatively normal life if their condition is properly managed and they have access to appropriate medical care. However, in developing countries, access to adequate treatment and medical care can…
Hemophilia can affect everyone differently, depending on your symptoms, the type of hemophilia you have, and its severity. This is why your care team should be based on your individual needs. But regardless of the specific specialists, you want a coordinated, comprehensive, multidisciplinary team of healthcare professionals…
In an article titled “Recognizing the need for personalization of hemophilia patient-reported outcomes in the prophylaxis era” published in the scientific journal Haemophilia, researchers reviewed two new tools that are used to measure patient reported outcome measures.
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…
With my oldest son, who is now 21, I never worried about limitations. He played soccer for a season, and that was the extent of his athletic pursuits. He just did not like sports and to this day, he does not understand the basics of a football game,…
People living with hemophilia face a 46% higher risk of bone fractures than the general population, with that risk increasing for those with severe disease or a history of treatment-blocking antibodies. These are the findings of a large-scale Canadian study that highlights a growing health concern for patients as…
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…
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6 famous people with hemophilia
Last updated Dec. 10, 2024, by Susie Strachan Hemophilia has affected people from all walks of life, including royalty, athletes, actors, and advocates. It’s a rare genetic bleeding disorder that mostly affects males, while females are more likely to be carriers. Learn about some of the notable names…
It’s impossible to turn on the TV and not find a reality show, in any of its many types. Some are like staged plays that claim to be real, yet they’re often scripted and orchestrated before they’re shot. Others are more social experiments in which human behavior is observed and…