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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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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Reflecting on how I’ve grown stronger over the past year

As the Jewish new year approaches, I find myself in a season of reflection. I’m looking back on the past year and taking stock of how far I’ve come, while also looking ahead with hope and intention. Living with Gaucher disease means that I’m always aware of my body,…

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Strength training with Pilates while living with Gaucher disease

Pilates workouts have become my “me time.” Once or twice a week, I step away from everything else — work, parenting, and the constant noise of daily life — and focus on myself and rebuilding my strength. After pregnancy, I felt especially weak, and Pilates offered a safe way…

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Breastfeeding has been a beautiful challenge for me as a new mother

Whether a mother feeds her baby by breast, bottle, pumped milk, or formula, it’s all sacred. Feeding a baby is an incredible act of love, and every mama is a superstar for sustaining life in whatever way she can. That said, breastfeeding has been the biggest blessing of my journey…

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As a mother, I have to take care of myself as well as my child

A couple of weeks ago, I faced a moment that many parents, especially those living with chronic illness, will recognize all too well. As a mom with Gaucher disease, I receive infusions every other week. And with a 10-month-old who’s constantly on the move, I’m always juggling how to…

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A holistic approach to healthcare helps me live well with Gaucher

Living with Gaucher disease often means relying on medication. Enzyme replacement therapy (ERT) is the foundation of my symptom management. But while ERT plays a vital role in my health, I’ve come to believe that it’s not the only key to me feeling better. In fact, focusing solely…

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Yes, I have Gaucher disease, but I don’t feel ‘sick’

As someone who is generally healthy and asymptomatic, I often feel like my Gaucher disease is tucked away in the back of my mind. Sometimes it creeps back in, reminding me, “Hey, I’m still here” — like when I get my infusion every other week or when my…

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Motherhood allows no time for a break, even with Gaucher

There are no vacation days when you’re a mom. If infusions once meant chilling on the couch, taking a nap, or watching my favorite TV show, today they look quite different for me. My baby, for instance, is almost 9 months old, and while we try to explain that…

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My unexpected diagnosis with Gaucher disease type 1

When most people imagine being diagnosed with a disease, they picture a cold, sterile doctor’s office and a somber physician delivering bad news. But my story didn’t start like that. I was a healthy kid with no red flags, no strange symptoms, and no reason to think I might have…


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