There are many things I never imagined I would become good at because of Gaucher disease. Reading blood work? Sure. Navigating my house while attached to an IV pole? Weirdly, yes. Making a cappuccino while receiving an infusion? Apparently, also yes. Recently, I found myself standing in the kitchen…
This week, on Oct. 1, the International Gaucher Alliance (IGA) is marking International Gaucher Day with the theme “Equity in Action,” highlighting that people with Gaucher disease may be at different stages of their journey and should have access to information, care, and support wherever they are. This…
For me, growing up with Gaucher disease involved a dichotomy of sorts. I did all the “normal” things kids do, but at the same time, my parents and doctors would tell me to be careful and remind me that I was disabled. I never had the privilege of experiencing…
