Being unemployed or under-educated can have a negative effect on hemophilia patients’ quality of life, including their pain levels and ability to function, according to the results of a questionnaire that were presented at the ASH Annual Meeting and Exposition. In the patients surveyed, increased pain, functional impairment and reduced…
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I’m confined to my bed, suffering from a bleed once more. Many hemophiliacs dread having a bleed in this area, called the iliopsoas muscles. It’s considered a very serious bleed, as it can result in permanent femoral nerve damage and, in some cases, amputation of the leg. The…
As I write this, it’s Nov. 1 and we’re observing All Saints’ Day. On this day, I remember my mom, who passed away last June. Her final resting place is many islands away from where I live, so I am unable to pay her a visit. Nevertheless, I offer…
Intimacy. Warmth. Comfort. Security. Closeness. These are things that many of us yearn for in relationships. However, when someone has a bleeding disorder, relationships can also be associated with other things, like fear, pain, embarrassment, and shame. Sexuality is hard to discuss,…
uniQure N.V. has updated the clinical data from its ongoing clinical trial of a gene therapy for the treatment of patients with hemophilia B. The results indicate sustained improvement by all patients at a low-dose, with durable levels of Factor IX (FIX) gene activity for several weeks after treatment. The…
When I look back on the things my husband, Jared, and I did in our 20s, I sometimes wonder how we managed to get through them without more emotional or physical scars. We were young, impulsive, and convinced that nothing too serious could happen as long as we “managed things…
I couldn’t believe Caeleb was about to get his first dose of Hemlibra (emicizumab-kxwh). I have been following several people whose children participated in the Hemlibra study (NCT02622321) before the Food and Drug Administration approved the therapy, and I saw how it changed their lives. After…
I have von Willebrand disease (VWD) and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. Hemophilia is often thought of as a condition that only affects men, but women can and do have it, too.
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What Is Von Willebrand Disease?
Von Willebrand Disease (VWD) is a genetic blood disorder where the person affected is deficient in a protein that helps blood clot — the Von Willebrand factor.  According to the Hemophilia Federation of America, the disease is genetic and often takes a while to be diagnosed as the…
A gene therapy approach acquired by uniQure was recently covered in two new patents, one issued in the United States and one in Canada, broadly covering ways of treating bleeding disorders that include hemophilia B, the company announced in a press release. The therapy has a nucleic acid encoding the…