As I sit at my computer, fatigue seeps into my bones. The intense heat here in the Philippines, combined with the side effects of my new acid reflux medication, amplifies my exhaustion. Mild tension headaches make looking at bright screens unbearable, rendering work nearly impossible. My body’s clear message is:…

During the December holiday season, while visiting family in Illinois and Wisconsin, I had an unexpected dental emergency: A crown cracked and fell out. Unfortunately, complications arose when I contracted COVID-19, causing delays in addressing the issue. When I finally managed to schedule an appointment for the crown…

This week, I’m doing something I’ve never done before: stepping into the ring of politics and lobbying my congresspeople. Many of those in the bleeding disorders community gather annually in Washington, D.C., to meet with U.S. representatives and senators. The goal is simple: to remind legislators that medical care…

There’s a stigma surrounding those who use wheelchairs. To most, they evoke pity: “Oh, how awful to be confined to a wheelchair.” Perhaps it’d be awful for the person making the statement, but is it awful for the person using the chair? When an older adult is in a wheelchair,…

As someone living with hemophilia B and epilepsy, my husband, Jared, has faced numerous health challenges throughout his life. From medical tests to hospitalizations, he’s endured his fair share of pain and discomfort. So when I recently confided in him about an unsettling taste lingering in my mouth…

March is Bleeding Disorders Awareness Month (BDAM) and patients, caregivers, advocates, and other supporters are coming together to call attention to conditions like hemophilia and von Willebrand disease that impact more than 3 million people in the U.S. Bleeding disorders are marked by uncontrolled bleeding that occurs from a…

The singer onstage opened his mouth, and notes flew through the air, falling on the ears of everyone listening. His tone indicated a beautifully powerful lyric tenor voice as the song filled the space, hypnotizing the crowd. As he finished his first number, the crowd roared with joy. He…

My younger son, Caeleb, struggled to get to his feet and go to physical therapy today. His right ankle has very little cartilage because of hemophilia complications, and he often struggles to get around without the assistance of a cane or walker. He looked at me and…

It’s hard to believe, but my youngest son, Caeleb, will graduate high school in just a few months. I think back over the past 18 years of his life and stand in awe regarding the difficulties he’s faced while living with hemophilia. In his elementary school years, he struggled…

Loneliness in marriage is a controversial subject, and one often discussed in a negative light. But in my marriage to my husband, Jared, who has severe hemophilia B and a seizure disorder, it’s a feeling that often creeps in whenever he’s stuck in bed due to a severe bleeding…