The Gaucher Guide to Grace - a Column by Rivka Silver

Sometimes it feels strange to write publicly about Gaucher disease because, most days, I don’t feel particularly sick. That’s not something people usually expect to hear from someone with a rare disease. There’s often an assumption that chronic illness has to feel constant and consuming, that it should always…

There’s something powerful about the simplicity of a good walk. It doesn’t require planning, special equipment, or a burst of motivation. You just step outside and start moving. And somehow, along the way, everything begins to feel a little lighter. Your thoughts settle, your mood shifts, and your body thanks…

When you live with a rare disorder and other chronic conditions, as I do, there’s a certain type of exhaustion that comes from constantly going from doctor to doctor. It’s not just physical exhaustion, but also mental. I start to feel like my whole life revolves around appointments, tests, and…

There are days when Gaucher disease feels like an interruption more than anything else. Not a crisis, and not even a central focus — just something that gets in the way. Life, on the other hand, is very full. I’m a stay-at-home mom to an active toddler while also…

Living with a chronic illness comes with challenges people often expect, such as regular medical testing, monitoring, and the occasional surprise. But one thing I’ve come to appreciate over the years is the value of having the right doctors in your corner. For people with rare conditions like Gaucher…

Feeling ready to start a family doesn’t always mean being ready medically. For people living with Gaucher disease, the decision to have a baby often includes an additional step: making sure their health is in the right place first. Before trying to conceive, many Gaucher patients look to their…

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…