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…
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Hemophilia is a rare genetic bleeding disorder primarily affecting males, though females can be carriers. Managing hemophilia involves regular medical visits, adherence to medication, and understanding bleed symptoms. Notable individuals with hemophilia include Queen Victoria and Alex Dowsett. Treatments like Hemlibra can reduce bleeding episodes in severe hemophilia A, and gene therapies like AMT-060 were explored for hemophilia B. Hemophilia can also impact sexual health due to concerns about bleeding, pain, or fatigue.
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6 Self-Care Tips for People Living With Hemophilia
Life with hemophilia can be challenging but with appropriate treatment and preventative self-care, many people living with the disease can live fairly normal lives. To help prevent bleeds and other complications, we’ve put together a list of six self-care tips for people living with hemophilia. MORE:Â Ten benefits of having…
AMT-060 was a first-generation gene therapy for hemophilia B that was tested in clinical trials as a potential treatment for reducing the risk of bleeding episodes in patients.
Hemophilia can affect many aspects of life, including sexual health. If you have hemophilia, sexual activity is generally safe as long as certain precautions are taken.
When given as a preventive treatment for nearly six years, Hemlibra (emicizumab) safely and effectively lowered the number of bleeding episodes in patients with severe hemophilia A, according to data from a Phase 1 clinical trial and its long-term extension study. Importantly, reductions in the number of bleeds…
My Life, Our Future (MLOF), a national program founded by leaders in the hemophilia and blood disorder community, marked Feb. 28 — Rare Disease Day — by launching the world’s largest research repository of its kind to researchers and scholars. The program is opening to U.S. scientists and will expand to worldwide scientists in 2018.
A Phase 3 clinical trial of treatment candidate AMT-061 for severe and moderately severe hemophilia B has treated its first patient. The open-label HOPE-B study (NCT03569891) is testing the safety and effectiveness of AMT-061 in adult men with hemophilia B. Patient recruitment is continuing for an estimated total of 56…
SPK-8016, also known as RG6358, is an experimental gene therapy that was being investigated for hemophilia A patients who had developed neutralizing antibodies (inhibitors) against clotting factor VIII (FVIII).
Hemophilia is a disorder characterized by excessive bleeding. Aminocaproic acid, also known as 6-aminocaproic acid or epsilon-aminocaproic acid, is an antifibrinolytic medication that can help to stabilize blood clots.
One of the major hurdles people with hemophilia face is complying with their medication schedule — in particular, injecting themselves several times a week with clotting factor. MORE: Seven recommended books to learn more about hemophilia Clotting factor has a relatively short half-life (the time it takes for a person’s…