When my husband, Jared, has a hemophilia bleed, we know what to do. We immediately implement the RICE method of Rest, Ice, Compression, and Elevation. We also add to that list factor infusions and the monitoring of Jared’s condition. Hemophilia is complex, but there’s a strategy for managing it.
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Blood visibly present in urine — called macroscopic hematuria — considerably increases the risk of hypertension in hemophilia patients with a family history of high blood pressure, and is not a “benign” condition for this patient group, a study reports. The study, “Macroscopic hematuria as a risk…
Hemgenix (etranacogene dezaparvovec), the first and only gene therapy approved for adults with hemophilia B, has won this year’s Prix Galien USA award in the category of Best Product for Rare/Orphan Diseases. The award — the nation’s top prize for leading-edge advances in life sciences — was received…
Baby Cittie turned a month old on Feb. 18. I’ve noticed that her leg has sported a largish gray spot resembling a bruise since birth. Although it has faded, it still hasn’t gone away entirely. As a first-time mom, I am naturally paranoid. I notice…
The past two weeks have been especially busy as I produced and directed the musical “Honk! JR.” in my community. Many children who’ve worked with me for years participated in the production. I can’t count the number of children’s theater programs I’ve directed over the years, but I do…
Feeling hopeless? Wondering how you will possibly find the energy to go on? Wanting to smash your alarm clock, pull your covers over your head, and hide in your bed all day long? You are not alone. Coping with hemophilia day in and day out, as a patient or a…
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How to Create a Family Emergency Kit
The National Center on Birth Defects and Development Disabilities has an online booklet that helps hemophilia patients and their families construct a plan in the event of an emergency. MORE: Initial results from phase 3 hemophilia trial of Emicizumab in children looks promising The plan focuses on all…
A review is continuing into a resubmitted application for approval of Roctavian (valoctocogene roxaparvovec), a gene therapy for adults with severe hemophilia A, with a planned advisory committee meeting having been canceled. The U.S. Food and Drug Administration (FDA) had requested, but now no longer intends, to meet with…
Delaying the start of immunosuppressive treatment in adults diagnosed with acquired hemophilia A who are receiving Hemlibra (emicizumab-kxwh) to prevent bleeding may reduce the risk of infections and extend survival, a clinical study found. Patients in the Phase 2 study (NCT04188639 received Hemlibra for 12 weeks while immunosuppression…
I enjoy family vacations. While we don’t necessarily take yearly trips, we cherish our adventures. My husband and I want to take a trip to Washington D.C. with our son, Caeleb, 16, who is a history buff. We have put the trip on hold because of the COVID-19 pandemic,…