Straight Paths With Crooked Lines — Susanna VanVickle

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Susanna VanVickle is a Cajun girl who grew up traveling the world as a missionary kid. Today she is a wife, mom, and teacher in North Texas. In 2019 she and three of her five children were diagnosed with Fabry disease. Though the rare disease journey came as a complete surprise, the VanVickle family tries to see the bigger picture and how a straight path can be drawn with crooked lines. As a Bionews columnist, Susanna now shares bits and pieces of her family’s experience with Fabry, hoping to encourage others who are in the trenches of the rare disease struggle.

Columns

Seeking good news as symptom relief eludes my children

The month of January tends to make people bloom with optimism and fresh resolve to achieve their wellness goals. However, the “take control of your health” message doesn’t resonate with people with Fabry disease. This time of year is a reminder of how much is outside of a Fabry…

Susanna VanVickle

Columns

The challenges of growing up with an invisible illness

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…

Columns

To my family, Fabry disease treatment isn’t one-size-fits-all

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,…

Columns

Fabry patients take a beating when rising temperatures kick in

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…

Columns

Why sharing our stories for Fabry Disease Awareness Month is vital

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…

Columns

Same mutation, different outcomes: My family’s Fabry story, part 3

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…

Columns

Same mutation, different outcomes: My family’s Fabry story, part 2

Second in a series. Read part one here. When our family was learning about our Fabry disease mutation, we heard about the inactivation of X chromosomes (where the mutation is found) and how Fabry disease thus presents differently in every female. That’s proven true in the…

Columns

Same mutation, different outcomes: My family’s Fabry story, part 1

First in a series. “Do you have time to talk?” Chris’ ominous voice over the phone caught me off guard. “Yes,” I answered and quickly shut my bedroom door to keep my five noisy kids from interrupting. Chris is a physician assistant married to my sister, and on that summer…

Columns

How expressing gratitude causes our happiness to grow

I walk into the small Jazzercise studio, where I regularly enjoy breaking a sweat, moving to music, and sharing space with upbeat people. Fall decor is on the walls. A rustic sign reads, “It is not happy people who are thankful. It’s thankful people who are happy.” These words ring…

Columns

Nurses and patients work together to make home infusions successful

The two clinical sites where our kids began their enzyme replacement therapy (ERT) for Fabry disease were staffed by top-notch nurses. My kids enjoyed snacks and entertainment while skilled hands worked IVs into their veins. Making the decision to do home infusions was a natural choice, however. The…

Columns

Many Fabry families, including mine, benefit from Make-A-Wish

My twin sons, Anthony and Michael, were diagnosed with Fabry disease at age 17. Anthony’s condition was identified by a dermatologist here in Texas who saw the cluster of angiokeratomas, or bumps, in his belly button and how they were spread across his torso and the rest of…


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