My husband, Jared, and I have written about the limited supply of clotting factor IX in the Philippines, where we live. Lately there’s been a greater shortage of that factor, which treats hemophilia B patients such as Jared. That cast a shadow over our hemophilia community’s recent annual…

I spend a lot of time in the kitchen during the holiday season. I enjoy creating my favorite dishes and finding new and exciting recipes. Many people follow recipes strictly, but I find joy in realizing they’re more of a guide than an exact science. Using a guide to cook…

It’s almost 11 in the morning. My husband Jared and I are lined up at the mall-based satellite branch of our national health insurance system. By now, the mall has been open just less than an hour, but there must be a hundred or so people already, impatiently awaiting their…

It’s hard to believe, but my youngest son, Caeleb, will graduate high school in just a few months. I think back over the past 18 years of his life and stand in awe regarding the difficulties he’s faced while living with hemophilia. In his elementary school years, he struggled…

Differences in sensory detection and pain thresholds were found in hemophilia patients taking prophylactics, compared to healthy individuals, and these differences did not change over the course of a one-year follow-up study. These findings indicate that “under prophylactic treatment, the existing difference in the pain profile between [people with…

A phone call in the wee hours of the morning makes the heart skip a beat, as it often brings bad news. A baby crying in the middle of the night means a sleep-deprived parent going through the motions of changing diapers and warming bottles. When the quiet hours of…

I often tell people to check my refrigerator if they want to track the development of hemophilia care in my family. For example, when my sons were small, the medicine they required, factor VIII, took up a full refrigerator, requiring us to buy a second one. As for other…

On Friday, Jan. 18, my husband, Jared, and I finally had our baby girl. We named her Melanie Citrine. (Courtesy of Alliah Czarielle) Labor was perhaps the most physically challenging thing I’ve ever done. On my birth plan, I stated that I wanted a…

The Philippines was in an extra festive mood over the Christmas season. Alongside the holiday parties, we were celebrating our country’s Miss Universe contender, Catriona Gray, who took home the crown. As a country, we tend to place high importance on events like this. To us, the Miss…

Von Willebrand Disease (VWD) is a genetic blood disorder where the person affected is deficient in a protein that helps blood clot — the Von Willebrand factor.  According to the Hemophilia Federation of America, the disease is genetic and often takes a while to be diagnosed as the…