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Hemophilia is a rare bleeding disorder. It leads to uncontrolled bleeding, hospitalizations, doctor visits, and the need for expensive medications. Bleeds result in costly absences from work and school. Receiving care at a federally funded hemophilia treatment center (HTC) is essential. Most hematologists focus on blood cancers or…

Today, as we take time to celebrate the gift of one another, I can’t help but think about the many trials my 16-year-old son, Caeleb, faced this year as a result of hemophilia. As a child, Caeleb struggled with frequent breakthrough bleeds, which have left him with excruciating…

During November, many people participate in daily gratitude challenges on social media. Finding something to give thanks for is easier on some days than others. Some seasons are filled with grateful moments, while others are filled with grief, sorrow, and exhaustion. My youngest son, Caeleb, is 16 years old…

Lately, I’ve been binge-watching the Korean TV drama “Extraordinary Attorney Woo.” It tells the story of a young lawyer with autism and the challenges she encounters (and does her best to overcome) in her life, career, and relationships. I instantly got hooked on the show for two reasons.

Dear Hemophilia Dad, I am writing to you today to protect the health of your beloved daughter. Trust me, I know the struggles you encounter daily. In my mind, you are a superhero. Your daughter is at risk for hemophilia, too. She is a carrier and needs testing…

I like my cabinets neatly arranged. But the kitchen cabinets are often hit-or-miss in the organization department. For example, the cabinets that house plastic lids and containers can be treacherous. When organized, the cabinet allows us to see what’s available. Every cover matches its proper container, and items sit neatly…

I’ve always had a hard time handling disappointment. I grew up labeled a high achiever and was accustomed to meeting high expectations. I feared disappointing other people, or feeling that my best efforts just weren’t enough. As a result, I became sensitive to disappointment, rejection, and failure — a fearsome…

Kendall Fitzpatrick and I have much in common. Like me, she has hemophilia B and von Willebrand disease. She’s a registered nurse, works for a specialty pharmacy, and is an outspoken advocate for women with bleeding disorders. She lives in New Kent, Virginia, and is mother to a…

My youngest son, Caeleb MacDonald, is a 16-year-old with hemophilia and chronic joint pain. Several times this year, the pain has become so intense that he cannot get out of bed. I cannot help but associate his new pain issues with his earlier years, when he suffered multiple…

There’s a freedom children have when they swing. Sometimes they need a little push, but before long, they learn how to push themselves. The sounds of chains squeaking and shoes scraping the dirt are imprinted in my mind. Swinging higher and higher is always the goal. Hair flies in the…