A Pompe patient shares the benefits of finding her community

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 importance of finding community beyond my Pompe tribe

When I was diagnosed with late-onset Pompe disease in 2018, I didn’t know what my life would look like moving forward. When I was told the disease had no cure, my mind went into a tailspin, taking me down into a deep, dark place. However, my doctor…

Trying to Fit In as a Teenage Rare Disease Parent

I was 16 when I had my son, Cayden, in 2018. Being a teen parent brought its own set of challenges. I had to leave public school and finish high school online. I also lost many friends, because most teenagers like to spend their weekends having fun, not cooped…