I visited a hemophilia treatment center for the first time in the 1980s, to have my factor levels tested. The phlebotomist couldn’t find a vein, and I was distraught. Workers ended up pinning me down to get my blood. The result was that my factor…

An interview-based study from Japan found professional support was necessary when mothers inform their daughters they might be carriers for hemophilia, as the women found themselves “not knowing what to do” and expressing “anxiety due to uncertainty.” In Japan, parents are often responsible for telling a child that a genetic…

What does an illness look like? Sometimes a bald head, pale skin, or a mobility device are outward signs that someone has an illness. People would never know my sons have hemophilia by looking at them today. My oldest son, Julian, is 24. He lives on his own,…

Four patients taking part in a Phase 3 clinical trial of Roche’s investigational hemophilia drug emicizumab (ACE910) have experienced serious thrombotic events, blood clots that cause partial or total obstruction, Reuters reported this week. The patients were being treated for breakthrough bleeding. According to Reuters, a Roche spokesperson said…

People with mild to moderate hemophilia, in particular women with the disease, face unique challenges, many that are specifically linked to a lack of information and insufficient engagement with other patients and healthcare providers, according to a panel of U.S. experts. In a recent study, these experts proposed new…

Dear Hemophilia Parent, Today, I write to you. I am a child with hemophilia. I am taking the liberty of speaking on behalf of your child, who may be 2 days, 2 years, or 20 years old. First and foremost, you are awesome, and I…

Starting Hemlibra (emicizumab) early is safe and helps to prevent bleeding in babies with severe hemophilia A who are untreated or minimally treated, though doctors should still monitor for self-reactive antibodies that can make other treatments less effective, a study suggested. The study, “Emicizumab in Previously Untreated…

Researchers have developed new versions of clotting factor IX (FIX) that may be used to create personalized treatments for people with hemophilia B — specifically, new replacement therapies designed to help more effectively control bleeding. According to the team, the development of these new FIX versions may serve to create both short-…

https://www.youtube.com/watch?v=z3f8elOVOrU This children’s video from Centers for Disease Control and Prevention focuses on how to tell your friends that you have hemophilia. MORE: How kids can play safe with hemophilia Billy, a young boy with hemophilia, answers some of the questions that his friends ask about the disease. He…