I’ve written here numerous times about my love for the American pop-punk band Fall Out Boy. Since discovering them in 2007, I’ve been a huge fan of not just their music, but also the guys in the band and their individual career paths. My husband, Jared, and I…
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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…
First, I want to make something clear. This column isn’t titled “In the Twinkling of an Eye: The Money Issue.” When I speak of investing, I mean directing our energy to different areas of our life. Think of it as depositing essential acts of kindness and assistance to those we…
Forty percent of men with hemophilia who responded to a survey said the condition can weigh on their sex life, although University of California researchers cautioned that the 20-person sample was very small. Some of the respondents said they can experience bleeding from sex. In addition, the joint stiffness and joint…
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Women Can Have Hemophilia, Too
Imagine you are in an emergency room with a life-threatening bleeding problem. How would you convince an ER doctor that you are a woman with hemophilia if they don’t think women with hemophilia exist? I have both von Willebrand disease (VWD) and hemophilia B, a less common form…
A hemophilia gene therapy developed by Spark Therapeutics and Pfizer nearly eliminated bleeding episodes in 10 patients who took part in a Phase 1/2 trial. The treatment, SPK-9001, worked so well in eight of the 10 that they were able to stop taking clotting factor replacements. Researchers published the preliminary trial…
Hemophilia treatment can be costly, but understanding insurance options and financial assistance programs may help reduce the burden. This resource highlights key costs and support tools to help you better manage care expenses.
In people with hemophilia A, certain immune markers in the blood may help predict patient responses to immune tolerance induction (ITI) — a treatment regimen used for individuals who develop inhibitors after factor replacement therapy — according to a new study by researchers in Brazil. Inhibitors, neutralizing antibodies…
Alprolix (eftrenonacog alfa) is an approved therapy that is used to prevent and control bleeds, including those occurring during surgery, in adults and children with hemophilia B.