Straight Paths With Crooked Lines
— Susanna VanVickle

An illustrated banner showing a world map with dotted lines connecting different destinations.

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

Film explores how to find joy amid suffering and hope within despair

I drizzled hot butter over my large popcorn and topped off my peach iced tea while my friend added toppings to her hot dog before we settled into our reclining seats. After a long week of teaching, we both relished the opportunity to unwind on this particular Friday afternoon with…

Susanna VanVickle

Columns

How one Fabry family stands together through joy and pain

Dallas residents are all talking about the unrelenting heat this year, as we’ve logged 52 days over 100 F. Besides the physical effects of bone-dry lawns, cracking foundations, and blistering-hot sidewalks, there are scary yet less visible effects of the heat wave on public health. Local officials warn…

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…


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