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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Information from patient surveys can help doctors do a better job of managing hemophilia and improving patients’ outcomes, an American study reports. The research, which appeared in the journal Patient Preference and Adherence, was titled “Construct validity of patient-reported outcome instruments in US adults with hemophilia: results from the Pain, Functional…
Combining two gene editing approaches in cells derived from a patient with severe hemophilia A successfully restored the levels and activity of the faulty clotting factor VIII (FVIII) and reduced bleedings in a mouse model of the disease, according to a new study. The research, “ssODN-Mediated…
When someone we love is diagnosed with a chronic illness, our instincts often compel us to search for solutions: stricter routines, healthier diets, more discipline, or the willpower to push through. While self-help culture tends to praise these strategies, our family’s experience with chronic illness has shown that they can…
Taking charge of your health when you have hemophilia is of great importance. Regardless of your hemophilia type — A, B or C — the goal is to keep your joints strong and healthy, and to keep extra weight off to avoid muscle strains and bleeding in vulnerable joints. Obesity…
It’s 9 a.m. Bright, tropical rays of sunlight force their way through our full-length windows — a signal that it’s time to get out of bed. My husband, Jared, always an early riser, often gets up first. Today is no exception. He goes to our kitchen downstairs, contemplates what he’ll…
CSL Behring announced that new data from studies of two approved treatments for hemophilia — Idelvion and Afstyla, both recombinant coagulation factors — will be presented at the XXXII International Congress of the World Federation of Hemophilia (WFH) 2016 next week. CSL will present six posters highlighting Idelvion, a long-acting recombinant albumin fusion…
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Advantages, Unanswered Questions About PEGylated Products for Hemophilia A Reviewed by Researchers
Researchers reviewed the current hemophilia research that focuses on the development of improved longer-acting factor replacement therapies, particularly PEGylated products. The new clinical research advances lead the scientific community to look at such developments with optimism, but also some caution. The study, “Potential role of a new PEGylated recombinant…
Excessive bleeding after oral surgery led to two people in China, both with normal pre-operative blood clotting tests, being diagnosed with hemophilia A, according to a recent case report. Mild hemophilia can go undetected in standard laboratory tests, and oral surgeons need to be prepared for such cases, the research…
This video, shared by Colleen, is all about a mobile app from Pfizer that helps hemophilia patients track bleeds, infusions and factor supply. It also allows those living with the disease to track their daily physical activities, steps and heart rate to help…