The Gaucher Guide to Grace — Rivka Silver

When you’re newly diagnosed with Gaucher disease, you’re given a lot of information. Much of it is well intentioned and medically sound, such as explanations of enzyme levels, treatment options, and what to expect next. What’s explained less often is how much you’ll learn about living with Gaucher along…

Living with Gaucher disease means I always have a strong awareness of my body in all its functions. Bone health, energy levels, and long-term stability aren’t abstract ideas — they’re part of my daily calculations, even when I’m considered “stable.” Recently, I finished a nutrition course, not because…

There’s a kind of vulnerability in living with a chronic illness that isn’t talked about enough. It’s not just the big procedures; it’s the constant, quiet ways you’re asked to open yourself up. As someone with Gaucher disease, I feel it in every appointment, every explanation, every moment of…

Most of the time, I forget I even have Gaucher disease. I don’t wake up feeling sick. I don’t move through my day with pain or obvious limitations. I work, take care of my family, make plans, and lead a full and busy life. If you passed me on…

Now that we’re in the month of November and the leaves and weather have shifted to fall, I’ve been reflecting on the idea of transitioning through seasons. Time often feels linear, but the beauty of seasons is that they bring cycles of change: moments of growth, transition, and movement. I…

Our society often rewards the people who are always going, going, going. We measure success by how busy we are, how much we accomplish, and how many people we can please along the way. For a long time, I lived that way, too. I felt the constant pressure to do…

My interest in nutrition began when I started noticing how much food affects how I feel — not just physically, but mentally and emotionally, too. Learning about the connection between diet, inflammation, and overall wellness opened my eyes to how much influence we have through the choices we make each…

Living with Gaucher disease has shaped how I think about my body in ways I never expected. For many people, body image is about appearance. For me, it has been less about the surface and more about the deeper, unsettling feeling that my body is failing me. When I…

As the Jewish new year approaches, I find myself in a season of reflection. I’m looking back on the past year and taking stock of how far I’ve come, while also looking ahead with hope and intention. Living with Gaucher disease means that I’m always aware of my body,…

Pilates workouts have become my “me time.” Once or twice a week, I step away from everything else — work, parenting, and the constant noise of daily life — and focus on myself and rebuilding my strength. After pregnancy, I felt especially weak, and Pilates offered a safe way…