Significant disparities in access to hemophilia treatment exist around the world. In general, people with hemophilia can live a relatively normal life if their condition is properly managed and they have access to appropriate medical care. However, in developing countries, access to adequate treatment and medical care can…

I live in what’s considered the high desert. At over 4,000 feet above sea level, my community experiences cold winters and hot summers. When the monsoon season brings rain, however, the desert transforms from a dry, brown landscape to one rich with green and flowering cacti. The one unfortunate part…

Have you ever seen a German playground? They’re infamous on the internet for appearing dangerous in an age of “safe” play spaces. Unlike most playgrounds we know of today, which are padded, carpeted, and lack sharp corners, German playgrounds are industrial looking structures built on regular ground.

As a woman with hemophilia B and von Willebrand disease, I understand the importance of awareness about bleeding disorders in women. How can you convince an ER doctor that you are a woman with hemophilia if they don’t believe such people exist? We do, even though the…

I must admit right off the bat that I’m a big fan of the musical “Hamilton.” I saw a production of it in Chicago and felt its energy flow through my veins like lightning. The dancing was nonstop, and most of the music was upbeat with a driving rhythm.

It’s 9 a.m. Bright, tropical rays of sunlight force their way through our full-length windows — a signal that it’s time to get out of bed. My husband, Jared, always an early riser, often gets up first. Today is no exception. He goes to our kitchen downstairs, contemplates what he’ll…

People with moderate-to-severe hemophilia and ankle joint disease reported significant impairments in life quality and foot and ankle function, according to a recent U.K. study. Chronic pain emerged as a significant predictor of these patient-reported outcomes, as did the presence of inhibitors — neutralizing antibodies that can lower the…

I love assembling jigsaw puzzles. There’s a sense of satisfaction as the individual pieces come together to form a beautiful picture, and the essence of creation feels empowering. My thoughts turn to the many times when wrestling with my sons’ hemophilia felt eerily similar to working on a jigsaw puzzle.

Hemgenix (etranacogene dezaparvovec), the first gene therapy approved for adults with hemophilia B, has been shown to work better than standard preventive replacement therapy to lower the frequency of bleeds — both spontaneous and joint bleeds — in this patient population. The therapy also was superior in…

When my boys were little, I dreamed about what their chosen activities might be — band, swimming, theater, or maybe soccer. I wanted to be a soccer mom, cheering on my sons from the sidelines and bringing orange slices for the team. My oldest son, Julian, did play soccer…