The holiday season is often filled with celebration, connection, and meaningful traditions. But for individuals living with Erdheim-Chester disease (ECD), this time of year can also bring unique challenges—fatigue, stress, disrupted routines, medical appointments, travel demands, or simply the pressure to “keep up” with holiday expectations.
The ECD Global Alliance wants to remind every patient, caregiver, and family member that your well-being comes first, and taking care of yourself during the holidays is not only important—it’s necessary.
Below are a few gentle reminders and tips to help you navigate the season with care and balance.
- Set Realistic Expectations
It’s okay if your holidays look different from others’. Give yourself permission to modify traditions, attend fewer events, or celebrate in quieter ways that feel comfortable and manageable for you.
- Prioritize Rest
Fatigue is common for many living with ECD. Allow plenty of time to rest, pace activities, and listen to your body. Resting is not missing out—it’s protecting your health.
- Manage Stress with Self-Compassion
The holidays can be emotionally complex. If you’re feeling overwhelmed, try grounding techniques, gentle movement, meditation, or simply taking time for quiet moments. Be kind to yourself—your feelings are valid.
- Pay Attention to Nutrition & Hydration
Seasonal foods and treats can be wonderful, but it’s still important to nourish your body. Stay hydrated, eat balanced meals when you can, and don’t hesitate to decline foods or drinks that don’t support your well-being.
- Communicate Your Needs
Family and friends often want to help but may not understand ECD. Let them know what you need—whether it’s a rest break, a quieter space, or flexibility in plans. Clear communication can reduce stress for everyone.
- Stay Connected to Support
If you’re feeling isolated—or just want to check in—remember that our community is here for you. The ECDGA offers chat sessions and webinars with others who truly understand.
You are never alone.
- Keep Up with Medications & Appointments
With busy holiday schedules, it can be easy to lose track of routines. Consider setting reminders for medications, packing essentials for travel, and confirming medical appointments in advance.
- Give Yourself Grace
Your worth is not defined by how much you do during the holidays. Celebrate the small moments, hold space for rest, and honor where you are on your ECD journey.
We’re Here for You
If you need information, please visit erdheim-chester.org. For additional support, you can contact the ECDGA at support@erdheim-chester.org.
From all of us at the ECD Global Alliance, we wish you peace, comfort, and connection this holiday season. You are an important part of our community, and we’re grateful for you.