Columns

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…

I signed up for a Facebook account in 2008. Social media was foreign to me then, but I tried it and was excited to find old friends from high school and college. Catching up on one another’s lives was enjoyable, and seeing my friends’ children resembling their parents was fascinating.

Fat-shaming is a widespread issue that can also affect people with hemophilia, especially young children. At its core, fat-shaming involves making negative comments or judgments about a person’s weight, which can lead to feelings of inadequacy or embarrassment. While these remarks may be intended to encourage weight loss or…

In my Oct. 4 column, I reflected on the devastation Hurricane Helene had inflicted on my community in Punta Gorda, Florida. I never imagined that just weeks later, I’d be writing about a second hurricane — Milton — that would prove even more destructive to my town than Helene.

When my son Caeleb was younger, we had periods when we spent more time in the hospital than at home because of his hemophilia complications. During those times, our family moved heaven and earth to stay connected. Caeleb was often admitted to the University of New Mexico Hospital’s…

One of the most pervasive and amusing misconceptions about hemophilia is that a person with the condition could bleed to death from a tiny paper cut. People often think that those with hemophilia must avoid everything that is sharp, which isn’t entirely accurate. Hemophilia doesn’t cause people to…

My fear of letting go of the past stems in part from my anxiety about change. I want my sons, who both have hemophilia, to take control of their lives and be responsible as they move through the world. They leave, but what about me? I’m not going…

My 18-year-old son, Caeleb, is an artist. When he starts talking about colors, a lengthy conversation will ensue. Now in college majoring in digital arts, he’s passionate about his field, and his love of color runs deep. Art has been a saving grace for Caeleb, who lives with severe…