Columns

Life Between Peak and Trough

One of the challenges for individuals with hemophilia — whether severe, moderate, or mild — is bleeds. Often people with hemophilia will struggle with bleeds into their joints. The bleeds are painful and limit mobility. If left untreated, they can cause long-term damage, such as arthritis.

Hemophilia in Fiction: Where Is It?

Last week, I read Gill Paul’s latest novel, “The Lost Daughter.” The book is a historical fiction account of Russia’s Romanov family. It is well-known that the Romanovs and hemophilia are connected, but I had no expectation that bleeding would play into the plot. Near the beginning of…

Let Us Cross the Bridge

A few years ago, my family and I attended an inhibitor symposium in San Francisco. While the conference was jam-packed with incredible information, we did have a little free time to explore the city. Fisherman’s Wharf had great food and beautiful views of the harbor. We stood on a…

Building Confidence in My Identity as a Father

As time passes, I can feel both the joys and the pressures of fatherhood. My life has centered around our daughter’s needs and ensuring that she is always happy and smiling. Friends have instructed me on the importance of fatherhood. So many problems are caused by weak father figures. Often,…

My Hemophilia Is an Invisible Disability

When you look at me, you’ll see a quirky, colorful, loud, and active person, yet at the same time, I am reserved. I am of average height and weight, and am known as a hiker, a cyclist, and (for very short stints) a beach jogger. I smile a…

Hope in the Toughest of Circumstances

Yesterday, I went through the pictures on my iPhone. I started with the most recent, moving backward, my heart beating faster with each swipe. By the time I had viewed two years’ worth, anxiety had me in its grasp. I felt like I couldn’t breathe, and I stopped looking…