A rare disease has run through five generations of his family, so he’s built community for others
“It was a decision when I was dating: At what point do you tell someone that you have this disease?”
For Jack Johnson, getting diagnosed with Fabry disease at age 7 was more of a formality. He’d been experiencing symptoms for several years already, and had watched multiple family members struggle with the rare condition. But around 7 was when Johnson’s pain started — triggered by exercise or being outdoors when it was too hot. Fabry disease is characterized by a buildup of the fatty lipid Gb3, which can cause gastrointestinal issues, kidney failure, stroke, chronic pain, and dangerous heart abnormalities.
Often, people with Fabry disease can’t sweat, making it difficult to regulate their body temperature. That was especially true for Johnson, who grew up on his family’s dairy farm in Bakersfield, Calif., in the oft-scorching San Joaquin Valley. He was tasked with caring for the pigs, cooling them down in the midday sun.
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