The Gaucher Guide to Grace — Rivka Silver

Rivka Silver holds a bachelor’s degree in sociology and anthropology from Bar-Ilan University and lives in Israel. She was diagnosed with Gaucher disease in 2020 at age 21. She’s married and recently became a mom to a baby boy. Through her column, Rivka wants to be open about the joys and challenges of navigating motherhood with a genetic condition.

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Living with a chronic illness that mostly exists in the background

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…

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One step at a time: Going for walks is my favorite way to exercise

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…

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When you’re stuck on the hamster wheel of figuring out what’s wrong

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…

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With a rare condition, having the right doctor in your corner is priceless

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…

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When being ready isn’t the only requirement for pregnancy

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…

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The things I wish I’d known after my Gaucher disease diagnosis

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…

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Building nutritional habits that support life with Gaucher disease

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…

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Constant medical vulnerability can be exhausting

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…

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Every 2 weeks, my treatment reminds me I have Gaucher disease

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…


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