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When you’re living with Erdheim-Chester Disease (ECD), physical activity might feel out of reach—but movement, when approached thoughtfully, can play a key role in improving quality of life. At a recent Patient and Family Gathering, Dr. Mariona Violán—a leading expert in sports medicine and adaptive physical therapy—shared valuable, evidence-based insights on staying active while managing ECD.
Her message was simple, but powerful: You don’t have to be an athlete to benefit from movement. You just have to start where you are.
Why Movement Matters
While ECD affects each person differently, many individuals face challenges like joint pain, fatigue, or difficulty with balance. Understandably, exercise can feel daunting. But gentle, consistent activity tailored to individual ability levels can help support strength, circulation, mobility, and even mood.
Dr. Violán emphasized that physical activity doesn’t mean pushing through pain. Instead, it’s about creating small, sustainable routines that support the body and mind.
Practical Tips from the Session
Here are some of Dr. Violán’s most helpful takeaways, as shared during the Staying Active session at the Patient Gathering:
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Start Slow and Stay Consistent: Even five minutes of light movement a few times a day can help improve flexibility and circulation.
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Stretching Matters: Gentle stretching can reduce stiffness and ease discomfort. A short morning and evening routine can make a big difference over time.
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Focus on Function: Think about movements that help you in everyday life—like standing from a chair, walking short distances, or reaching overhead.
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Low-Impact is Key: Activities like walking, chair yoga, tai chi, or water-based exercise are often gentle on joints while still providing meaningful benefits.
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Balance and Core Work: Exercises that improve core strength and balance—such as standing on one foot or seated leg lifts—can reduce fall risk and support mobility.
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Listen to Your Body: If something causes pain or leaves you overly fatigued, scale back and adjust. Progress may be slow, but it’s still progress.
A Mind-Body Approach
Dr. Violán also highlighted the importance of mindfulness during movement. Practices like guided breathing, meditation, or simply being present during stretching sessions can support emotional well-being—something especially important when living with a rare condition like ECD.
Caregivers can participate, too. Joining in simple routines not only supports the patient physically but also nurtures connection and shared purpose.
Looking Ahead to Barcelona
As we prepare for the 2025 Patient & Family Gathering in Barcelona, Spain on May 26, we’re inspired to continue building on the momentum of sessions like Dr. Violán’s. These events are about more than medical facts—they’re about tools for living well with ECD.
Whether you’re just starting to explore gentle movement or looking to refine your daily routine, staying active is one small way to regain control in the face of a complex disease. And you don’t have to do it alone.
ECDGA is here to support your journey with information, community, and compassion—one mindful movement at a time.
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.
