The Gaucher Guide to Grace — Rivka Silver

When you live with a chronic illness, doctor appointments become a regular part of life. Some are routine. Some bring answers. Others bring more questions than you walked in with. Over the past few months, I’ve had more than my fair share of them. What started with one unexpected medical…

I recently wrote a column about how I don’t really feel “sick” with Gaucher disease. Looking back, though, I don’t think that column told the whole story. I’m currently dealing with some other medical issues, and when you already have a chronic condition, everything somehow feels connected. A…

One of the questions I never expected to face as a parent is how to explain a chronic illness to a toddler. My son is almost 2 years old, which means he doesn’t understand much about Gaucher disease. He doesn’t know what a genetic disorder is, why I need…

There was a time when getting medical information required a lot more effort. If you had a question about a symptom, a test result, or something your doctor mentioned in passing, you either waited until your next appointment or spent hours searching through websites and forums, trying to piece together…

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…