Straight Paths With Crooked Lines — Susanna VanVickle

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,…

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…

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…

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…

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…

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…

My five kids are different in oh so many ways, which was abundantly clear from the varied responses when three of them were diagnosed with Fabry disease. Anthony, 21, was introspective and curious when he learned about…

“Be Kind” is a popular slogan on T-shirts and wall art today. It’s a good message, but how do you foster the ability? I propose that Fabry disease patients, their family members, and their caregivers have much to…

It was a typical school day for most 17-year-olds, but for my twin sons Michael and Anthony, there was nothing ordinary about Oct. 22, 2019. It was the first day of enzyme replacement therapy (ERT) for both of…