This online service allows patients with bleeding disorders like hemophilia to share important information about their treatment and bleeds with their medical team in real time. MORE: Five tips for living healthily with hemophilia The HemaGo XChange portal was created by Novo Nordisk A/S as an update to their existing website and mobile…
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I recently visited the small town of Arcadia, Florida, which is not far from my home. Arcadia holds an important place in history for the topic of hemophilia and AIDS. The story of what happened there is a lesson about how ignorance can fuel hatred and knowledge…
Ina Fowler, 68, of Brooksville, Florida, lives with several conditions, including hemophilia C, platelet dysfunction, atrial fibrillation, and peripheral artery disease. She recently suffered a brain bleed. To learn more about Ina’s journey, I spoke with her via Zoom. When Ina was in second grade, she hemorrhaged after a…
Hemgenix (etranacogene dezaparvovec), the first gene therapy approved for adults with hemophilia B, has been shown to work better than standard preventive replacement therapy to lower the frequency of bleeds — both spontaneous and joint bleeds — in this patient population. The therapy also was superior in…
Last week, I gave in to my 79-year-old mother’s pleas to travel from Florida to the Midwest for a family gathering in Illinois. She is immunocompromised, and I am her caregiver. The pandemic has kept us off public transportation, as she is vulnerable to COVID-19 and any other infection from…
Patient treatment for hemophilia B has come a long way since the introduction of factor IX (FIX) concentrates. In a recent commentary published in the journal Blood and titled “A new era for hemophilia B treatment,” researchers from Oregon Health and Science University and Bloodworks Northwest highlighted recent advances in…
Cyklokapron (tranexamic acid) is an approved hemophilia medication that's designed to control or prevent bleeding episodes in patients, and reduce the need for replacement therapy during and following a tooth extraction.
When I was a young woman, I was very negative. I would look ahead to a situation and immediately imagine the possible pitfalls. I never considered everything would work according to plan. When plans went better than expected, it was a bonus. As a former glass-half-empty kind of person,…