As a pastor, I always remind my parishioners that it’s not enough to profess one’s faith. A person must live out the tenets of what they believe. In other words, talk is cheap. It doesn’t do a person any good to shout their love for God on Sunday and act…

Exhaustion, stress, loneliness, and boredom are a few symptoms of living in our current world. Some people easily adapt to new ways of moving in the world, and others have a more difficult time. What is amazing is how the rare disease/disorder community seems to move forward without skipping a…

Whenever I hear the phrase, “Knowledge is power, ” I think back to the animated children’s television show Schoolhouse Rock. I loved how fun, catchy songs taught kids how bills are passed, the preamble to the Constitution, and my favorite tune, Conjunction Junction. Every episode started with an intro stating,…

During the National Conference for Women with Hemophilia and Rare Factor Deficiencies, held Oct. 3-5 in Detroit, I joined a standing-room-only session titled “More Than One Story: Exploring Joint Health in Hemophilia, Hypermobility, and Beyond.” It was refreshing to see hypermobility on the agenda — a topic that resonates…

Joint pain significantly rose and overall joint health — particularly range of motion — diminished with limitations on physical activities during the COVID-19 lockdown for people with hemophilia and joint disease, a small study from Spain reported. The study “Musculoskeletal Changes in Hemophilia Patients Subsequent to COVID−19…

There is no doubt that the new medicine Hemlibra (emicizumab) is a game changer in the treatment of hemophilia. Instead of multiple infusions daily, one injection could last two weeks to a month. Such incredible new ways of approaching treatment and care introduce different concerns and result in…

A simple tonsillectomy led to my eventual diagnosis of hemophilia B and von Willebrand disease. Without a family history, a bleeding disorder wasn’t on my family’s or pediatrician’s radar. I had to almost bleed to death for a bleeding disorder to be suspected. Terror of the tonsils The…

My husband Jared mentioned in his latest column that he works at a local organization called the Hemophilia Association of the Philippines for Love and Service (HAPLOS). It is truly a pleasure to serve other people with hemophilia, along with their families and carers, through the organization’s efforts.

When my husband, Jared, and I started dating, I was aware that he has hemophilia B and epilepsy. Not long after that, someone close to me gave me a gratuitous warning about dating someone with chronic illness. They told me I would face more challenges and…