Raising two sons with hemophilia has taught me to be flexible. I have learned that my best attempts to make plans can be thrown out the window in an instant at the onset of a bleed. Treating a bleed, going to the hospital, or accommodating a rigorous infusing schedule take…

I have a confession: I hate to self-infuse. I am really bad at it. Well, at least most of the time I am. The multitude of blown and missed veins over the past few years have synthesized to wholly deflate my confidence with this critical skill.  …

The National Center on Birth Defects and Development Disabilities has an online booklet that helps hemophilia patients and their families construct a plan in the event of an emergency. MORE: Initial results from phase 3 hemophilia trial of Emicizumab in children looks promising The plan focuses on all…

My husband and I are both United Methodist clergy, so our children are called PKs (pastors’ kids). Some PKs earn reputations for misbehaving, giving their parents plenty of gray hairs. Other PKs are kind and considerate, attend youth groups and Bible studies, and are seen as model children. My sons…

This week is National Eating Disorders Awareness Week. Eating disorders are tough to address, yet critical, as many suffer in silence. I was one of them. I struggled with an eating disorder a few times in college. But I would vehemently deny it if…

I recently participated in a webinar called “Mild Matters,” organized by the Hemophilia Federation of America. The purpose was to discuss challenges faced by people with mild bleeding disorders. When the discussion turned to self-advocacy, I began to think about my own history of dealing with von Willebrand disease…

Owing to conflicting market exclusivity rights, the U.S. Food and Drug Administration (FDA) has partially rescinded its decision to approve BeneFIX and Ixinity for additional indications both therapies received last year for the treatment of hemophilia B, according to the National Hemophilia Foundation. Pfizer’s BeneFIX and…

Immunizations are sometimes tricky when a child has a bleeding disorder. The shots can cause bruising and swelling at the injection site, or even a muscle bleed. Each person is different, but nevertheless, precautions must be taken. When my children needed immunizations, I always gave them a dose of…

I love to watch hummingbirds. They’re lightning-fast as they move from flower to flower, feasting on nectar and insects. When they come to the feeder outside my window, their chirps and hums are different from those of other birds. I’m intrigued that the hummingbirds go into a state…

My husband, Jared, and I attended our first international concert together this month when we saw the American rock band Fall Out Boy at the Araneta Coliseum in Quezon City, Philippines. This concert was a milestone for both of us and truly one for the books. I’ve dreamed…