It’s that time of year again when brackets are busted, Cinderella stories happen, and basketball fans everywhere are glued to the television for the madness of March. The NCAA basketball tournament is full of buzzer-beaters, heartbreak, and jaw-dropping comebacks. And oddly enough, for many of us living with bleeding disorders,…
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Years ago, I attended a bleeding disorders conference where a person with hemophilia shared about an encounter they had with a law enforcement officer during a routine traffic stop. In order to appreciate the exchange, it’s important to understand that those of us with hemophilia are missing a protein…
Women like me often wonder how the hemophilia community has overlooked us for so long. The stories of women labeled as mere “carriers” — despite experiencing life-threatening bleeding episodes — are endless. For decades, we’ve lived with symptoms that disrupt our lives, yet we were dismissed, misdiagnosed, or told…
I still need to select my one-word resolution for 2022. I usually have an idea by the end of November, but 2021 was busy and fruitful, and thinking about a word was not on my radar. I relished every moment of the year because I genuinely found peace. Instead…
SB-FIX, developed by Sangamo Therapeutics, is an investigative gene therapy for hemophilia B that, by making changes to the DNA sequence, may allow hemophilia B patients to make their own factor IX protein. (Factor IX is missing or present at low levels only in patients with hemophilia B,…
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…
Next month, April 21–23, the MacDonald family heads to San Antonio to attend the Hemophilia Federation of America’s 2022 Symposium. I cannot wait to see old friends and participate in educational sessions regarding upcoming treatments and services to the bleeding disorders community. My wife, Cazandra, and I haven’t…
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Helpless, but Not Hopeless
Part one in a series. I stood over my son’s hospital bed, waiting for the morphine to kick in and give him some relief. “MacDonald the Younger” continued to scream as the pain became unbearable. My boy had once described to me his experience of a bleeding…
Getting diagnosed with a bleeding disorder can be difficult. I am somewhat fortunate. At age 10 in 1975, I was diagnosed with multiple bleeding disorders. But that doesn’t mean I didn’t have bumps and challenges along the way. Testing, treatment, and classification of bleeding disorders have changed dramatically since…
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Look Ma, No Port!
My son has his seventh port lodged on his left side, between two ribs, just below his chest. This one is his most successful port regarding the amount of time (two-plus years) and accessibility. When the doctor placed one of the earlier ports at “MacDonald the Younger’s”…