A holistic approach to healthcare helps me live well with Gaucher
How I've complemented my treatment with lifestyle and wellness strategies
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 on lab values and dosage adjustments can leave me feeling more like a lab rat than a human being.
In March 2023, I began experiencing a wave of new symptoms including extreme fatigue, lightheadedness, and persistent body aches. I kept waiting for answers, but they never came. That’s when I began looking beyond the traditional medical model and discovered the work of Robin Ely, an integrative medicine physician and founding member of the National Gaucher Foundation. Her research on inflammation and her whole-person approach resonated deeply with me, especially since Gaucher is fundamentally an inflammatory disease.
After meeting with Ely, something shifted. She took the time to review all of my labs, listen to my full story, and treat me as a whole person, not just a diagnosis. I felt seen, understood, and, for the first time in a long while, hopeful. I left that appointment inspired, determined to take charge of my health in new ways.
I began researching how nutrition, movement, and supplements could support Gaucher patients. I learned how important it is to bolster my bone health, especially with Gaucher-related low bone density, by taking calcium and vitamin D3 and eating foods rich in calcium. I also started acupuncture treatments to help reduce inflammation. At the time, I was doing yoga and weightlifting, and both helped me feel stronger and more stable. Now, after pregnancy, I’ve shifted to Pilates, which has been a game changer for rebuilding strength and improving my overall well-being.
I felt so empowered by the changes I was making that I wanted to find a way to give back to the Gaucher community. I enrolled in an integrative nutrition program to become a certified health coach. My goal is to open a practice to help other Gaucher patients manage their symptoms with a more holistic approach while complementing their medical treatment with lifestyle and wellness strategies.
ERT is essential for many, but it’s not a cure-all. I believe true wellness with Gaucher requires a more comprehensive lens, one that includes lifestyle, emotional well-being, and personalized care. That shift in perspective has made all the difference for me, and I believe it can help others, too.
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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