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The emotional toll of caring for a child with hemophilia

Recently, I attended the Florida Bleeding Disorders Association’s Women’s Educational Retreat in Hollywood, Florida. I came away with several important takeaways, but one presentation by Lucila Ramirez Donaldson of Genentech truly resonated: caregiver burnout. Many of the women attending were mothers or partners of people living with hemophilia. I’ve…

Times when we can be parents and not caregivers

Despite what appears to be a tranquil season regarding my sons’ hemophilia, I know it simmers right under the surface and could rear its ugly head immediately. For now, life is good. As my wife, Cazandra, and I are moving a couple hundred miles away as we…

Caregiving is a lifelong learning process

Lately, I’ve been thinking about what it means to be an expert. In my work as a virtual marketer and strategist, the word gets used all the time. People in my profession are expected to act like we know exactly what we’re doing. We’re told to speak with…

Improving mental well-being in the hemophilia community

I’ve lived with bleeding disorders all my life. I’ve infused at home, navigated emergency rooms, and advocated for better care for myself and others. But when I was invited to participate in a global hackathon on mental well-being in the hemophilia community, I was struck by something that often…