While the holiday season brings excitement, it also creates unique challenges for families like ours who are managing chronic conditions. My husband, Jared, has severe hemophilia B and epilepsy, and I have attention-deficit/hyperactivity disorder (ADHD). While common advice suggests taking it slow, setting strict boundaries, and skipping some…

Adults and adolescents with hemophilia A or hemophilia B without inhibitors experienced significantly fewer bleeding episodes when using concizumab as a prophylactic (preventive) treatment compared with those who weren’t on any prophylaxis. That’s according to data from explorer8 (NCT04082429), an ongoing Phase 3 clinical study in which…

One thing I noticed during my son Caeleb’s frequent hospitalizations was the need for his mother, Cazandra, and I to circle the wagons to protect him and his brother, Julian. We gave friends and family updates and quick calls, but during many holidays that we celebrated in the hospital,…

Hemophilia patients who received intensive factor VIII (FVIII) replacement therapy for better joint health were nearly five times more likely to see a reduction or complete resolution of synovial hypertrophy — swelling and thickening of the connective tissue that lines the inside of a joint — compared with those…

My wife, Cazandra, had complicated surgery last week that required her to spend some time in the hospital, followed by at least two weeks of inpatient rehabilitation. We were in shock, as we’d thought she would spend three days in a health facility and then finish her…

My oldest son, Julian, recently approached me and asked, “Dad, can you play this song for me on the piano? I have to post a singing audition tonight.” Panic filled my body. I responded, “Oh, Julian, this song has too many fast chord changes.” He walked away, trying to find…

A delayed diagnosis is common for people with acquired hemophilia A (AHA), according to a new study that found that it took more than a month to get a diagnosis after the first bleeding episode for about 1 in 3 patients. Despite these delays, all AHA patients in the…

As a woman with hemophilia, one of the greatest challenges I face is being believed. This challenge is multifaceted. First, I struggle to convince people that women can and do have hemophilia. Next, I have to explain that it’s possible for us to bleed like men with the…

Clotting proteins that are missing or are defective in hemophilia can directly affect the activity of cells responsible for maintaining bone health, a study found. The findings shed new light on why bone problems are a common issue among people with hemophilia, researchers said. The study, “…

This month, I attended One Drop, a “rare bleeding disorders consortium” hosted by Comprehensive Health Education Services (CHES) in Tampa, Florida. The event supported individuals and families with deficiencies of factor I, II, V, VII, X, XI, XIII as well as rare platelet disorders, such as Glanzmann thrombasthenia. Janet Brewer,…