I vividly remember the playground at Our Lady of Fatima Catholic School in Galena Park, Texas. The monkey bar dome was the place for the risk-takers, who climbed to the top and faced the ground. I preferred the swings, which catapulted the brave ones as they flew off in a…
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Hemophilia is a genetic disorder, mainly affecting men, caused by a deficiency in clotting factors VIII (hemophilia A), factor IX (hemophilia B), or factor XI (hemophilia C). Although patients had been previously warned against physical exercises, there are in fact numerous benefits of physical exercise for hemophilia sufferers, according to hog.org. MORE: …
The National Hemophilia Foundation (NHF) and Impact Education, LLC (IMPACT) have jointly announced the fourth annual National Hemophilia Foundation Annual Meeting pre-conference symposium has been specifically designed for pharmacists — including specialty, home health, health plan, and managed Medicaid pharmacists — as well as for medical directors and other…
Save One Life, the first globally focused organization to sponsor children with bleeding disorders one-on-one, recently celebrated its 15th anniversary. More than 130 guests from the hemophilia community worldwide gathered in New York City Sept. 29 at the Manhattan Penthouse on Fifth Avenue. The guest of honor was…
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…
Sports and physical activity can benefit people living with hemophilia, according to a recent study. Researchers in Germany and the United Kingdom investigated to find whether participating in sports can benefit adults with varying degrees of hemophilia severity. The report, “The impact of sport on health status,…
U.S. hemophiliacs who use patient-reported outcome (PRO) instruments can provide reliable information on their disease burden, finds a new study that appeared in the journal Patient Preference and Adherence. In the study, “Reliability of patient-reported outcome instruments in US adults with hemophilia: the Pain, Functional Impairment and Quality…
When given as a prophylactic, or preventive therapy, Advate worked better than on-demand treatment at lowering the number of spontaneous bleeds in people with moderate or severe hemophilia A, according to seven-year data from a real-world study. A separate analysis of the study, called AHEAD International (NCT02078427),…
Hemophilia has a substantial impact on sexual function and well-being for many men with the disease, but they rarely discuss it with their doctors, a study from the Netherlands found. “To address this gap, tools designed to provide and assess information about sexual functioning and well-being to normalize the…
When I was diagnosed with bleeding disorders in the 1970s, the world of hemophilia looked very different. Treatments were scarce, hospital visits were frequent, and the idea of living a “normal” life seemed like a distant dream. Today, I meet children and young adults with hemophilia who’ve never known…