Columns

My daughter’s nanny left last week for a two-week vacation to her hometown. Since then, my husband, Jared, and I have been getting by without an extra pair of hands to help with chores and childcare. So far, it’s been a tiring, albeit interesting, journey. Ever since we became a…

Hemophilia B and experimental gene therapy have been in the news lately. I was even surprised to hear a story on the topic while listening to my local NPR station. Hemophilia B is the less common form of the disorder that arises when a…

Passion motivates us and puts a fire in our belly to strive for something outside ourselves. Without a sense of purpose, we become less motivated to rise above our current situation and struggle to find a key ingredient to a happy life. As we strive to find our way,…

When my first son, Julian, was born in 1996 and diagnosed with severe hemophilia A, I thought my world was ending. I expected to give birth to a healthy baby boy. I never dreamed he’d have a medical condition. I went through the stages of grief: denial,…

One of my current goals in life is to become wealthy. I cannot deny that I need more personal finances than I currently have to sustain my family and live a balanced and fruitful life. As a carer to a husband with hemophilia and a seizure disorder while…

In February, I wrote about hemophilia’s effects on bone health after attending a webinar sponsored by Factor My Way, a patient support program. It featured bleeding disorders expert Claudio Sandoval, MD, who explained that everyone with hemophilia A (factor VIII deficiency) is at an increased risk of…

One of my favorite musicals is “Into the Woods,” with a book by James Lapine and music and lyrics by Stephen Sondheim. One of its roles that I wish I could perform is the Baker, but that’s for another time. In the show, the woods serve as a…

Living with pain is exhausting. However, those living with pain have numerous ways to manage their condition, seeking relief through medication, physical therapy, massage, chiropractic care, and even hypnosis. Knowing the cause of that pain is helpful for doctors and patients as they work to find ways to cope and…

My daughter, Cittie, is now 3 and a half years old. She’s grown so much over the past years, from a tiny and helpless little baby to a more independent preschooler with a mind of her own. She’s gotten good at expressing what she likes and dislikes. She’s also…

Living with any chronic illness comes with a financial burden. Hemophilia, in particular, is extremely rare and extremely expensive. What follows is a summary of the expenses, insurance, and savings that I’ve encountered in my journey with bleeding disorders. Expenses Most years, I’m sure to hit the $7,000+…