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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While I was worried about the effects of Gaucher, life happened anyway

When I was diagnosed with Gaucher disease at 21, I had a lot of questions about what it would mean for my future. Some were medical. I wondered whether I would develop complications or whether having a genetic disease would make certain things more complicated than I had expected.

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Recognizing the role nutrition and exercise play alongside treatment

Having Gaucher disease has made me think about my health in ways I probably wouldn’t have otherwise. I pay attention to my blood work, keep up with my doctor appointments, and receive regular enzyme replacement therapy. I also think about things like nutrition, exercise, and what I can…

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When living with chronic illness turns into ‘just a typical day’

There are many things I never imagined I would become good at because of Gaucher disease. Reading blood work? Sure. Navigating my house while attached to an IV pole? Weirdly, yes. Making a cappuccino while receiving an infusion? Apparently, also yes. Recently, I found myself standing in the kitchen…

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Chronic health conditions don’t have to stop us from living our lives

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…

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Being cautious about symptoms without living in fear

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…

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The wellness movement needs to be more understanding of chronic illness

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,…

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When the doctor says they don’t need to see me anytime soon

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…

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Finding a good doctor makes all the difference when facing unknowns

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…

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With AI and healthcare, how much information is too much?

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…


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