Columns

Marriage is a beautiful thing. People often describe it in flowery terms — “an unbreakable promise of partnership,” “a sacred unity of two souls.” Those who possess a more worldly mindset might regard it as a legal arrangement — albeit a powerful and binding one that changes every aspect…

My bleeding disorders, hemophilia B and von Willebrand disease, have significantly affected my family. As I’ve aged, my appreciation for my family has grown tremendously. I’ve come to realize that hemophilia‘s impact isn’t just limited to me; it’s also affected my family in profound ways. True, patients…

I’m a pastor, so I encounter the word “grace” almost every day. Words of encouragement pour out of my mouth as I talk with parishioners struggling to make their way in the world. I often say, “Give yourself some grace. Everyone falls short of the mark, but that doesn’t…

I’m training to become a chaplain. I want to work in a hospital setting one day, which will allow me to serve patients facing medical challenges. I’ll also have the privilege of walking with those who are in their last days. Sitting with people who are struggling at the hands…

Dear Younger Self, Congratulations! You’ve found a person who’ll stick with you for life. What a blessing! Jared happens to have hemophilia B and a seizure disorder, and you’re going to be his carer. Big deal, right? I’m sure you’re feeling brave and unfazed now, as is…

People with hemophilia experience prolonged bleeding, even from minor injuries, and may also experience spontaneous bleeding into joints, muscles, and other organs. These bleeds can cause pain, joint damage, and other complications, making pain management an essential aspect of hemophilia care. To alleviate intermittent pain, I employ…

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…

When my sons were little, there were always mountains of laundry. How could such a tiny human go through so many onesies? There were dozens of little socks to be matched, stains to be treated, and hundreds of pieces of clothing to be folded. It was never-ending. There were weeks…

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…

Historically, hemophilia has been viewed as a disease that affects men and boys, which has led to significant gender bias against women with the disease in research, diagnosis, and treatment. As a result, there’s a lack of awareness and understanding of how hemophilia affects women and…