Erdheim-Chester Disease Global Alliance

When living with a rare condition like Erdheim-Chester Disease (ECD), daily choices—like what’s on your plate—can make a meaningful difference in how you feel. While there is no specific “ECD diet,” eating in a balanced, mindful way can support overall health and help you feel more in control of your well-being. This is especially important when your body is navigating complex treatments or the physical toll of chronic inflammation.

At this year’s ECD Global Alliance Patient & Family Gathering in Barcelona on May 26, attendees will have the opportunity to explore the connection between nutrition and health in a dedicated session with Dr. Rafael Lopez Urdiales. His talk will offer insights into how thoughtful dietary habits can complement ECD care—without claiming to treat or cure the disease.

Why Nutrition Matters

Erdheim-Chester Disease is a rare blood cancer that can impact multiple organs in the body—including the heart, kidneys, bones, and brain—due to the abnormal buildup of immune system cells called histiocytes. These infiltrations can trigger inflammation and tissue damage, which may lead to fatigue, pain, or metabolic changes.

While food choices don’t alter the course of the disease, good nutrition can support immune function, aid in healing, and contribute to overall vitality. A body that’s well-nourished is often better equipped to handle the physical stress of illness and medical treatment.

Basic Nutritional Guidance for ECD Patients

Navigating a chronic illness is challenging enough—meal planning shouldn’t add to that stress. Below are simple, evidence-based tips that can benefit nearly everyone, including those living with ECD:

Prioritize anti-inflammatory foods: Think colorful fruits and vegetables, leafy greens, berries, olive oil, fatty fish like salmon, and whole grains such as oats or brown rice. These help reduce inflammation and support cellular health.
Limit processed foods and added sugars: High-sugar and ultra-processed foods can contribute to systemic inflammation, which may be particularly important for those already dealing with inflammatory disease.
Stay hydrated: Proper hydration supports kidney function and helps with the side effects of many medications. Aim for water, herbal teas, or low-sugar drinks throughout the day.
Consider bone health: Because ECD often affects the bones, getting enough calcium and vitamin D—through diet or supplements, as advised by a physician—can be beneficial.
Eat small, balanced meals: When fatigue or nausea is present, lighter meals throughout the day may be easier to manage than large, heavy ones.

A Word on Individual Needs

It’s essential to remember that no one-size-fits-all diet exists—especially for people with complex medical conditions. Some ECD patients may experience kidney involvement or other organ-specific effects that require tailored dietary restrictions or adjustments. That’s why consulting with a registered dietitian or medical professional is crucial before making significant changes.

Looking Ahead to Barcelona

We’re thrilled to host Dr. Rafael Lopez Urdiales at the 2025 Patient & Family Gathering in Barcelona, where he will dive deeper into the relationship between nutrition, inflammation, and disease management. This session will provide practical advice, bust common myths, and empower attendees with tools to make informed food choices that support their overall health journey.

Whether you’re newly diagnosed or have been living with ECD for years, nutrition is one of the everyday ways you can care for yourself—one bite at a time.

Join us in Barcelona this May to learn more, ask questions, and find community. Because when we gather, we grow stronger together.

The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.