Straight Paths With Crooked Lines - a Column by Susanna VanVickle

Columns

Enzyme replacement therapy days are smoother with these 3 steps

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 Fabry four years ago. He sought to learn as much as possible…

Columns

What those with Fabry disease understand about kindness

“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 teach the general population about kindness. The complexity of life with…

Columns

Enzyme replacement therapy for Fabry is a gift and a challenge

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 them, to treat Fabry disease. The adventure ahead was unpredictable,…

Columns

How we discovered a rare case of my rare disease

I’m not sure which surprised me more — that my 75-year-old mother was open to the obnoxious process of spitting into a saliva sample for a second time, or that my dad might have the Fabry mutation that three of my children and I share. We recently learned about…

Columns

Our quest to find a doctor with experience treating Fabry disease

My first column for Fabry Disease News introduced readers to my family’s Fabry story. In it, I described the unexpected “crooked lines” of a summer trip that led to my twin teenage sons — Anthony and Michael — being diagnosed. As we evaded one storm — with…