Self-Care

A diagnosis of Erdheim-Chester Disease (ECD) typically comes as a shock to most patients, sometimes after a roller coaster of emotions during a long diagnostic journey.  Patients are encouraged to process the diagnosis and determine the best way forward.

As a patient, you are encouraged to:

• Find ways to relax. When you need time to recharge, find a comfortable and enjoyable place.  Take time for yourself, time to do something you enjoy.  This could be reading, listening to music, journaling, spending time with those you love, playing a game, or doing whatever allows you to relax and be calm.
• Maintain your social connections. Stay in touch with your friends and family.  Continue with your social activities as you’ve always done when possible.  Phone calls and video chats are also great ways to stay in contact with those you enjoy.  If someone offers to help you, allow them to do so.  If someone indicates they want to help you but don’t know how, suggest ways they could help with shipping, running errands, or attending to those small home chores.
• Consider your mental health. Talk with your doctor about how you feel.  If you feel depressed or anxious, tell your medical provider.  These feelings are not uncommon for ECD patients, and your doctor may be able to help. However, you may need to initiate the subject if your doctor doesn’t. 
• Make time for physical activity. Staying active is good for everyone and can help reduce stress. Do what you can and be sure to keep safe. If necessary, adapt what you enjoy doing for exercise. Talk to your medical team about possible physical (physio) therapy to help you with balance issues.
• Maintain a healthy diet. Eating nutritious foods helps your body to work its best. Talk to your healthcare team if you are uncertain about what diet to follow.  Most doctors suggest a whole-food diet that includes fruits, vegetables, whole grains, lean protein, nuts, and beans.
• Get plenty of sleep. Good quality sleep is important for everyone.  Talk with your doctor if you are having difficulty going to sleep or staying asleep.
• Be open to new activities. Life changes often require us to change.  Look for new opportunities.  For instance, you can get involved with the ECD Global Alliance!  Join a chat session to talk with others affected by ECD, or plan to come to the annual ECD Conference to meet new friends and learn more about ECD and how to best manage your health with ECD.