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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…

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…

It’s bluebonnet season in Texas. The state flower crawls across the hillsides and along the roads, bringing a vibrant blue to the landscape. People flock to the most prominent patches to sit among the flowers and capture pictures. It’s a Texas tradition. The last time I took pictures in a…

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…

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…

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…

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.