The Gaucher Guide to Grace
— Rivka Silver

I’m currently navigating a plethora of health challenges, including Gaucher disease and a recent diagnosis of antiphospholipid antibody syndrome, all while raising an almost-2-year-old. So you might think my family and I were crazy for recently traveling across the world to the United States. And, honestly, maybe we…

When you live with a chronic illness, you learn to pay attention to your body. You notice changes. You learn what is normal for you and what isn’t. You learn which symptoms can wait until your next appointment and which ones deserve a phone call to your doctor or…

I live in a community where wellness is almost a language of its own. People swap sourdough starters, recommend herbal tinctures, and debate seed oils over coffee. Home births are celebrated. Organic food is the default. There’s a quiet belief that if you nourish your body well enough, move enough,…

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…