The Gaucher Guide to Grace — Rivka Silver

A couple of weeks ago, I faced a moment that many parents, especially those living with chronic illness, will recognize all too well. As a mom with Gaucher disease, I receive infusions every other week. And with a 10-month-old who’s constantly on the move, I’m always juggling how to…

Living with Gaucher disease often means relying on medication. Enzyme replacement therapy (ERT) is the foundation of my symptom management. But while ERT plays a vital role in my health, I’ve come to believe that it’s not the only key to me feeling better. In fact, focusing solely…

As someone who is generally healthy and asymptomatic, I often feel like my Gaucher disease is tucked away in the back of my mind. Sometimes it creeps back in, reminding me, “Hey, I’m still here” — like when I get my infusion every other week or when my…

There are no vacation days when you’re a mom. If infusions once meant chilling on the couch, taking a nap, or watching my favorite TV show, today they look quite different for me. My baby, for instance, is almost 9 months old, and while we try to explain that…