I have been struggling at home lately. I always pictured a peaceful and fulfilling married life. As a wife, I thought I would be queen of my home. Each corner of our house would be filled with my favorite decorations, and our fridge, pantry, and bar would be…

Wouldn’t it have been nice to receive an instruction manual when first diagnosed? The doctor might share a blueprint, surefire way of raising a child with a bleeding disorder: “Follow this when this happens, and all will be fine.” Those who manage chronic illnesses know full well that there…

The terrible, awful, no-good, very bad year for my family is not 2020. It was 2013. My youngest son, Caeleb, spent most of that year in the hospital. In 2013, Caeleb, who was in second grade, missed about 70 days of school due to recurring bleeding in his…

Women with genetic blood disorders, including those who are carriers of hemophilia A and B, face multiple uncertainties surrounding their diagnosis, according to a recent interview-based study. Many women claimed to have been misdiagnosed initially and did not receive a correct diagnosis until after the disease had…

We finally got a dog! She is a 3-month-old purebred golden retriever. It was love at first sight when we saw her at the pet store. From our very first interactions, we knew she was the one. We named her Lucky because the golden color of her coat is associated…

The National Institutes of Health (NIH) awarded the DNA Medicine Institute (DMI) a $1.5 million grant to advance a quick and easy way of monitoring factor VIII (FVIII) and Hemlibra (emicizumab) blood levels in people with hemophilia A, especially those in developing countries. DMI,…

The first participant was dosed with the investigational gene therapy treatment SB-525 (giroctocogene fitelparvovec) in a Phase 3 clinical trial in men with hemophilia A, according to developers Pfizer and Sangamo Therapeutics. AFFINE (NCT04370054) is a pivotal trial, which means it is intended to…

Life in the hospital can overwhelm us and leave us beaten down, as if we fought a war to end all wars. We exist by preparing for the next nurse, technician, or doctor to enter the room to check on our loved one. In our case, “MacDonald the Younger” suffered…

I have never heard anyone say, “I wish I could relive middle school.” It is a time when bodies rage with hormones and kids are gangly and awkward with acne and questions. It is also a time when grace is not extended to others. Kids can be mean.

The National Hemophilia Foundation (NHF) is inviting the country’s bleeding disorder community and others to participate in a first virtual Unite for Bleeding Disorders Walk on Oct. 10. The walk provides a means to raise funds for and awareness of disorders such as hemophilia. Due to the…