The Pompe Community Diaries - a Column by Anthony Wu

In my last column, as part of “The Pompe Community Diaries” series, I introduced 47-year-old Katy Arvidson, who lives with Pompe disease and is the current Ms. Wheelchair Alaska USA. In a recent video chat with Arvidson, we discussed how finding community helped her mentally. Excerpts, edited for…

“The Pompe Community Diaries” is a series that follows the journeys, musings, and challenges of those in the Pompe disease patient community. This week, I’m introducing Katy Arvidson, who is the current Ms. Wheelchair Alaska USA. Katy is wheelchair- and ventilator-dependent because of Pompe disease. She lives in…

In my last column, as part of “The Pompe Community Diaries” series, I introduced 37-year-old Michael Thames, a behavior analyst from South Carolina who has Pompe disease. When he was younger, Thames was confident in his ability to be self-sufficient. But from the beginning of his training in…

In this column, I’m introducing what I call “The Pompe Community Diaries,” a series that will follow the journeys, musings, and challenges of the fellow Pompe disease patient community. I’ll collaborate with community members to share their voices and day-to-day experiences over time. It’s a space meant to foster…

Our 6-year-old child, Geno, who was diagnosed with Pompe disease via newborn screening, has for years told classmates he can’t eat candy. During snack time, at friends’ birthday parties, or holidays like Halloween, sometimes he’ll say he’s allergic to it. Luckily, we have a great group of kids…