Columns

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,…

When my oldest son, Julian, was 5, our paths crossed in the medical world. My wife, Cazandra, was out of town, and my boy and I were holding down the fort at home. Julian had hemophilia with a low-titer inhibitor and thus needed to infuse factor VIII every day.

Preparing for major spinal surgery has me feeling more than the usual pre-op jitters. There’s something more profound at work — a feeling that connects me to the years of watching my son Caeleb endure numerous surgeries as a result of complications from severe hemophilia with an inhibitor. Because…

Today, when girls and women struggle to obtain a hemophilia diagnosis and proper treatment, I am angry. We need to do better. A timely diagnosis is crucial, as delayed testing or treatment can endanger women — especially if they are in an accident that causes bleeding…

I’ve lately come to realize that pride and dignity are core values in my life, profoundly influencing my sense of self and my interactions with others. Although pride is sometimes seen as a negative trait, there’s a crucial distinction between healthy and unhealthy pride. The former allows us to feel…

After the flooding from Hurricane Milton totaled my car, I found myself with a whirlwind of emotions and decisions to make. Now, as I embark on the journey of car shopping, I can’t help but notice how much this process mirrors my life with bleeding disorders. Both experiences require patience,…

“Use the Press’n Seal to cover his bandages when showering!” That’s the text I sent to the wife of a hospitalized friend, who was preparing to be released after an arduous stay. Hearing of his plight with doctors, nurses, and a second surgery was reminiscent of past hospitalizations with my…

Living with hemophilia involves more than managing physical symptoms. It comes with mental and emotional challenges, too. My husband, Jared, who has severe hemophilia B and epilepsy, has spent much of his life feeling the need to prove himself. From childhood to adulthood, this drive for validation shaped…

Wayne Cook is someone you can’t help but love from the moment you meet him. His warmth, passion, and dedication to the hemophilia community have made him an irreplaceable figure. He stars in “On the Shoulders of Giants,” a film by a patient engagement agency called Believe Limited that…

Last week was busy. I spent four days in the mountains on a clergy retreat at the Sacramento Camp and Conference Center in southern New Mexico. When the retreat ended last Thursday, I went to my home elsewhere in the state, met a group at my church, and then…