Fatigue is one of the most common—and often most frustrating—challenges faced by individuals living with Erdheim-Chester Disease (ECD). This isn’t just feeling tired at the end of a long day. Chronic fatigue associated with ECD can impact nearly every aspect of daily life, from completing basic tasks to participating in activities you enjoy. Many ECD patients describe this exhaustion as persistent, sometimes overwhelming, and difficult to explain to others who may not understand the disease.

At the Erdheim-Chester Disease Global Alliance (ECDGA), we recognize how important it is to address fatigue with compassion and practical strategies. While there’s no one-size-fits-all solution, many patients have found relief by prioritizing rest, engaging in gentle exercise (like walking or stretching), and practicing stress management techniques such as meditation, deep breathing, or journaling. Small adjustments—like pacing yourself, setting realistic goals, and listening to your body—can make a big difference in managing energy levels.

Want to hear more? Check out this helpful video from one of our past Patient and Family Gathering sessions for additional insights on managing fatigue:

Watch the video

We’d love to hear from you! If you have strategies that help you manage fatigue, share them with the community in the comments. You never know who might need to hear your tip today.