Columns

I grew up in a missionary family, and we were constantly moving. By the time I was in the fourth grade, we’d lived in six different countries. Moving around the world, experiencing new cultures, and interacting with all kinds of people were formative for me. I love travel, adventure, and…

Fabry disease can be an indirect cause of cancer after a transplant. I’m an example of that possibility. After my 2020 heart transplant at Duke University Medical Center, I was told that my risk of developing cancer was higher. The organ transplant antirejection medications I must take…

My oldest sons, twins Michael and Anthony, have Fabry disease. Their symptoms have been present since childhood, but back then, we didn’t know that Fabry was the culprit. The boys’ health issues became more pronounced during their tumultuous teen years, leading to genetic testing for our…

For several years before I had a heart transplant in September 2020, I’d become progressively weaker, more fatigued, and out of breath. Like many others with Fabry disease, I had heart, kidney, and lung disease, and I’d lived an increasingly sedentary lifestyle for several years. As my…

Note: This column describes the experiences of the author’s children with various enzyme replacement therapies. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “Straight Paths With Crooked Lines,” my column, describes the VanVickle family’s journey with Fabry disease,…

The sizzle of burgers on backyard grills, the plop of fishing lures cast into lake waters, and the crack of the home run ball are sounds announcing “summer is here!” Across America, ballparks, amusement parks, zoos, lakes, forests, and beaches are coming alive as people brave the beating sun to…

The manifestations of my Fabry disease are much improved and now stable after more than 21 years of enzyme replacement therapy, as well as a heart transplant I had in late 2020. But Fabry continues to occasionally surprise me. In the past few years, for example, I’ve…

Clad in a sweaty helmet, shoulder pads, and practice gear, an 11-year-old football player pushes through the pain of cramping and burning feet. Hiding his tears, he doesn’t complain because he wants to be tough, play hard, and lead the team to victory. Would it have been a relief for…

Sharing my experiences with Fabry disease and spreading awareness of the condition are top priorities for me. Since Fabry disease was first described in 1898, researchers and advocates have worked to achieve a better understanding of the disease, improve how it’s managed, get new treatments approved, and…

Last in a series. Read part one and part two. In this three-part interview series, I am happy to share the candid, personal perspectives of my three children with Fabry disease. I’ve already spoken with Marisa, 13, and Michael, 21. This final installment offers a peek into…