This summer brings a tinge of melancholy as the Sangre de Oro Chapter of the National Hemophilia Foundation has announced that its usual weeklong summer camp will not meet in person. While I understand the reason for avoiding unnecessary health risks, I still feel sad for the regular…

My 15-year-old son, Caeleb, is looking for a summer job. We live in a small town, so his choices are limited, and many jobs require applicants to be at least 16. Part of me hopes he waits until next summer to find a job, but he is actively looking. The…

Sometimes a person must learn a lesson the hard way before making changes in their life. My youngest son, Caeleb, is 15, and he is discovering some truths about his body. Due to extensive damage in his right knee and ankle from hemophilia, simple things such as running and…

My husband, Jared, and I are fond of advocacy work. Our advocacy for people with chronic and mental illnesses inspires many of the things we do, including the way we run our small business. Our online jewelry store is our bread and butter, but it also is a way…

Hemlibra (emicizumab-kxwh) has been a wonder medicine for many hemophilia patients, including my youngest son. Among the benefits that he receives is a respite from internal bleeds. He now infuses every other week instead of every day. We no longer focus on numbers regarding inhibitor levels, but pray…

CSL Behring has closed an agreement giving it global commercialization and licensing rights to AMT-061, an experimental gene therapy for hemophilia B now being tested in a Phase 3 clinical trial. The therapy’s developer, uniQure, will receive an upfront cash payment of $450 million from CSL…

When I was young, I learned how to be a caregiver for my grandfather. My mother, sister, and I lived with my grandparents for longer than I can remember. I had an incredibly unique relationship with my mother’s parents, particularly my grandfather. When I was about 13, he had a…

Doctors, nurses, hospitals, and clinics are simply part of life with a rare, chronic condition such as hemophilia. Many people in the bleeding disorders community learn early on that speaking up for themselves and their loved ones is crucial to their care. Over the years of raising two sons with…

My husband, Jared, and I are quiet, introverted people. We’re both averse to noisy crowds and overstimulating activities. Our idea of a good time is immersing ourselves in hobbies or getting away to a weekend nature retreat. Although my Myers-Briggs Type Indicator is ENFP, a personality classification that stands…

The last time my youngest son spent the night in a hospital due to a breakthrough bleeding episode was in February 2014. As years passed, his health continued to improve, and life returned to normal. The only difference between my son and the boy next door was the…