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

I’m finally taking the increased risk of stroke in Fabry disease seriously

I live six hours away from Cajun country, where my family line is rooted. I miss the lush greens of southern Louisiana, the comfort food, and most of all, the people I love so dearly. On July 3, my daughter and I were driving there when I saw a message…

Susanna VanVickle

Columns

Understanding how Fabry disease affects our mental health

When I learned of our family’s first Fabry disease diagnosis on an August afternoon in 2019, I recall a sudden surge of energy and purpose as I walked from the doctor’s office to my car. I was on a mission. Distractions melted away, and I got to work connecting…

Columns

In the French Pyrenees, an entire community shares our burdens

There is a story that brings 5 million visitors each year to a hamlet nestled in the foothills of the majestic Pyrenees. Lourdes, France, has a population of only about 15,000, but massive crowds of pilgrims have flooded the town since 1858, when news spread of an apparition…

Columns

Making strides toward greater Fabry disease awareness

Fabry Disease News kicked off April’s Fabry Awareness Month with an article explaining the purpose of the month and how our community can get involved. One way to participate was by joining a virtual run/walk fundraiser hosted by the Fabry Support & Information Group (FSIG). Neighbors gather for…

Columns

Finding my tribe at FSIG’s recent Fabry community get-together

I was met with warm and welcoming smiles when I walked into a boutique hotel near Dallas, Texas, for the recent Fabry Support & Information Group (FSIG) Get Together. There, I spotted a familiar face standing next to a display table. It was Nancy Ngotho, the senior patient education…

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…

Columns

Helping my children with Fabry find ways to combat depression

We were excited the first time our patient education liaison from pharmaceutical company Sanofi offered to take us out to a fancy restaurant. Several members of my family had just been diagnosed with Fabry disease, and we planned to talk about the condition over dinner. As a family of…

Columns

How a little love can lighten someone else’s load

Racing down a hill I travel daily, not realizing that my car was going almost as fast as my mind, I caught sight of police lights in my rearview mirror. What?! Not a ticket! Could my day get any worse? That was the day we were told that my 9-year-old…

Columns

The importance of compassion for Fabry patients and caregivers

Sitting by the stone hearth at La Madeleine restaurant, two friends and I vulnerably shared our thoughts over soup and salad. The three of us savor life updates, laughter, and counsel. We have many things in common: We are committed Christian women, each with four sons and a daughter. We…


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