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As a person with multiple bleeding disorders, I’m an expert at removing blood from many materials, including carpet, clothing, and furniture. Sometimes the blood wins and will ruin a new shirt. Although I’m in my 50s, a blood stain can still get the best of me, as happened last…

Earlier this week, I stopped the car and let my youngest son, Caeleb, out for his first day as a junior in high school. I looked at him and told him that I loved him and that this year could be the start of something extraordinary. His laugh let me…

My youngest son, Caeleb, is 16 and preparing to begin his junior year in high school. School has been difficult for him since before kindergarten. With complications from hemophilia and an inhibitor, he missed numerous days of school through his third-grade year, which caused him to…

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…