My oldest son, Julian, called me last Saturday evening with exciting news. He successfully auditioned to sing in a cabaret with a New York-based theater group. He’ll perform a solo at a West 34th Street theater near Times Square on June 26. I could feel the excitement through the phone…

It usually starts as an innocent question in an attempt to make friendly conversation with my husband, Jared, and me. “So, how’s Jared? How’s his health?” Those who ask this question are often aware that Jared has hemophilia B and a seizure disorder. But not everyone knows how…

When my youngest son, Caeleb, was 5 years old, he participated in our church’s yearly Easter egg hunt. We divided the children into younger and older categories to help even the playing field. The smaller church members started first, gathering as many eggs as they could find. After the little…

Lately, I’ve been reading a great deal of news about Hemgenix (etranacogene dezaparvovec), a one-time gene therapy approved by the U.S. Food and Drug Administration last November for adults with hemophilia B. Hemgenix, which also was approved by the European Commission in February, was found in…

In my faith tradition, next week is known as Holy Week. We remember the days leading up to the Crucifixion of Jesus, his burial, and his Resurrection. Each day we remember certain aspects of his journey to the cross. The Sunday before Easter, we celebrate Jesus’ triumphal return to Jerusalem…

My mom passed away a few weeks ago. Over the past six years, it has been a great honor and privilege to be able to care for her. It was an opportunity to show love and appreciation for the person who helped shape my life and repay her for all she…

Through the COVID-19 pandemic, we became used to washing our hands frequently. As we held them under the faucet, we believed that disease particles too small for the human eye would be washed away, protecting us from catching the virus. Many medical professionals, in fact, told us that strict…

Online shopping is one of my guilty pleasures. In fact, as I write this column, I may have spent a significant fraction of the day swiping through hundreds of pages of items on my favorite shopping app. I don’t always end up ordering every item I find — I simply…

Conditions like hemophilia and von Willebrand disease are thought to affect more than 3 million U.S. residents. Across the country, patients, caregivers, advocates, and other supporters are coming together this month for Bleeding Disorders Awareness Month (BDAM) to participate in conversations and webinars, and share information about key community…

I’ve been sick these past few days with gastrointestinal issues. What began as a wave of nausea turned into an entire morning of vomiting, followed by a seemingly endless bout of painful diarrhea. I was confined to my bed, unable to get any work done, and subsisting on a diet…