Building nutritional habits that support life with Gaucher disease
It's not about perfection, but rather following simple and useful principles
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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 I was looking for a miracle fix, but because I wanted to better understand how to support my body in small, realistic ways. I also want to become a nutrition coach, so that I can eventually give back to the Gaucher community by sharing what I’ve learned. Having a rare disease means spending years gathering information, and this felt like a way to turn that learning into something meaningful.
Nutrition can feel overwhelming, especially when you’re managing a rare disease. There’s so much conflicting information, so many rules, and so much pressure to “do it right.” What the course gave me wasn’t perfection — it gave me clarity around a few simple principles I could actually use and pass along.
Nourishing and enjoyable
One of the areas that stood out to me most was calcium. For many people with Gaucher disease, bone health is an ongoing concern, and yet calcium intake can feel surprisingly complicated. As part of my Gaucher disease, I was diagnosed with osteoporosis, which has made calcium and vitamin D especially important for me. Supplements don’t always feel accessible or well tolerated, and on days when energy is low, even thinking about balanced meals can feel like too much.
What helped me was shifting my mindset away from “getting it all at once” and toward building nutrients into foods I already rely on — especially foods that are easy to prepare. For me, that’s smoothies. I wanted something simple, nourishing, and genuinely enjoyable to drink. Over time, one smoothie has become a regular part of my routine.
The base of my smoothie is plain Greek yogurt. I like that it provides protein along with added calcium, which feels especially supportive given my focus on bone health. It’s filling without being heavy, and it helps keep the smoothie balanced rather than just sweet.
I add kale next. Leafy greens can be hit or miss for people, but blended into a smoothie, kale is surprisingly easy. It’s full of calcium and vitamin K, which support bone health, along with other micronutrients, and I like knowing I’m getting those benefits without having to think too hard about it.
For fruit, I usually use blueberries and strawberries. I appreciate that they’re rich in antioxidants and have a relatively low glycemic index compared to some other fruits.
Finally, I add almond butter. This might be my favorite part. It adds healthy fats and a bit of extra protein, making the smoothie taste really good. When you’re living with a chronic illness, enjoyment matters. If something doesn’t taste good, it’s not going to become a habit, no matter how nutritious it’s supposed to be.
This smoothie isn’t a prescription, and it’s not meant to be a solution. Everyone’s nutritional needs are different, especially when you have a rare disease like Gaucher. For me, it’s simply one small way I support my body — and one example of the kind of practical, realistic tools I hope to share as I continue this path.
Finishing the nutrition course didn’t make me an expert, and it didn’t suddenly simplify life with Gaucher disease. What it did give me was a sense of agency. Living with a chronic condition is often about collecting small supports over time. This smoothie is one of mine, and sharing it feels like a small way to give back.
Note: Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
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