Like many American homes in January, our household is working to change habits. We’ve decided to take on the challenge of purging our diets of sugar, gluten, and highly processed foods. At the moment, four of us in the house are prepared to embrace clean eating, but only one of…
Straight Paths With Crooked Lines - a Column by Susanna VanVickle
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…
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…
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…
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…
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…
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…
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…
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…
Recent Posts
- Despite disease symptoms, long delays seen for a Fabry diagnosis in children
- Fabry Awareness Month focuses on community, strength, and support
- Finding my tribe at FSIG’s recent Fabry community get-together
- New monthly dosing of Elfabrio approved in EU for some Fabry patients
- Understanding the significance of lyso-Gb3 in Fabry disease
- FDA grants orphan designation to new Fabry cell therapy GT-GLA-S03
- Sangamo seeks accelerated US approval of gene therapy for Fabry
- Common Fabry symptoms often mimic IBS in adults
- Two of my sons share what it’s like having three siblings with Fabry
- Idorsia outlines new Phase 3 program for lucerastat in Fabry disease