Columns

For decades, people with hemophilia have benefited from remarkable advances in treatment. Meanwhile, many people living with von Willebrand disease (VWD) have continued relying on therapies developed more than 20 years ago. Too often, VWD itself has been misunderstood or minimized. Even getting diagnosed can be complicated.

First in a series. When our sons were babies, my wife and I depended on our home-care company to infuse them with a clotting agent to combat the internal bleeding caused by their hemophilia. Infusions require a steady hand to hold the needle, insert it into a…

As a chaplain, I am privileged to stand at the bedside of someone who is dying. Often, few words are exchanged. I know it is my presence there that matters most. When people learn that I work in hospice, they often say, “Oh, my goodness, that must be hard work.

Have you ever felt as though God or the universe was reaching out to offer you comfort? Whether you pray to Jesus, Allah, Adonai, or honor the gifts of Mother Earth, being in tune with your spiritual self can be a profound source of solace during the challenges of living…

I’ve written before about not seeing myself as a caregiver in the traditional sense. For us caregivers, hemophilia doesn’t usually demand round-the-clock care. My husband, Jared, manages his condition independently. He infuses. He monitors his body. He makes decisions about risk and rest. My role on most days is…

January is supposed to feel like a reset — a clean slate and a fresh start. But for people with bleeding disorders, it often feels like the opposite. Prior authorizations expire. Deductibles reset. Insurance coverage shifts. Nothing about my medical reality changes, but suddenly, everything about access to care feels…

Most of the writing I see about mental health suggests that addressing the obstacles in your way is crucial to discovering joy. While it’s important to discuss the challenges we face in the bleeding disorders community, we must also remember to celebrate and give thanks when we conquer a mountain.

Some of the funniest commercials are for insurance companies. Allstate’s Mayhem always makes me laugh. The GEICO Gecko is a fun, familiar character, and so are Flo from Progressive and Liberty Mutual’s LiMu Emu and Doug. But one series of commercials feels…

“We are uncomfortable with you around and struggle to be in your presence. We find that you talk too much and are self-centered. When you hosted dinner, you made us eat in an insulting location we did not like,” the person said. Defending myself, I said, “I am so sorry,…

Treatment for burn injuries is usually straightforward: Cool the skin, manage the wound, control pain, and let time do the rest. That’s the version most people are familiar with. When hemophilia enters the picture, though, even a “simple” burn can quietly turn into something far more complicated. To add…