The pain that accompanied my periods was excruciating, exacerbated by my two bleeding disorders, hemophilia B and von Willebrand disease. I vividly recall my gynecologist explaining that during a bleeding episode, the severity of my clots and bleeding was comparable to giving birth during menstruation, and thus it…
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Alaska, Antarctica, and Greenland have something in common: They’re a few of the places where glaciers are present. A glacier is a large, slow-moving mass of ice and snow that forms over an extended period in areas where more snow accumulates during the winter than melts during the summer. Many…
As we prepare to celebrate Christmas, I can’t help but remember a particular year in the MacDonald household. In 2013, my youngest son, Caeleb, couldn’t catch a break from hemophilia. Constant spontaneous bleeding episodes into his right knee and ankle kept my boy in the hospital more often…
February 2014 was a significant time in the life of my family. For years we saw our younger son regularly suffer bleed after bleed. He suffered from an inhibitor and an allergy to factor. Nothing seemed to help. We felt lost and unsure about how to continue seeking…
San Rafael, California-based BioMarin Pharmaceutical will present interim data of an open-label, Phase 1/2 clinical trial of BMN 270, an investigational gene therapy treatment for hemophilia at the upcoming XXXII International Congress of the World Federation of Hemophilia (WFH) July 24-28 in Orlando, according to a news release. The late-breaking…
When I was 3 years old, I joined a television pageant for little girls called “Princess Asia.” I won the top prize. But when I look back on that moment now, the crown itself feels almost incidental. What stands out more is that I caught amebiasis, an intestinal infection, just…
I’ve been pondering the minimalism movement a lot lately. This is because I recently found myself with more than a dozen boxes from my childhood home, and along with these came a sense of responsibility to organize the contents inside of them. As my husband and I unpacked the…
There is a funny cartoon making the Facebook rounds. It shows two images, one for “normal parents” and the other for “medical field parents.” The normal parents’ side has a duck dressed as a doctor and a mama duck holding her baby up, saying, “He sneezed! Help…
Last week, I was privileged to attend Genentech‘s Rare Blood Disease Summit at its campus in San Francisco. I’ve been proud to serve on this biotechnology company’s Women in Hemophilia advisory board for the past two years. The invitation-only summit was a small but powerful gathering, bringing together the…
My youngest son, Caeleb, became best friends with a girl named Taylor in sixth grade. Then, our family moved away to Texas, but returned to New Mexico two years later. Caeleb and Taylor now live an hour apart. Despite it all, they have remained close. It is remarkable for a…